Resources to Support You Every Step of the Way

Kelly, Narrator: A new diagnosis can make you feel alone. Outside of just processing the change to your life, understanding everything that goes into your treatment can feel overwhelming.

Amgen By Your Side is a patient support program designed specifically for someone prescribed a Amgen medication. Our dedicated team is your partner, committed to providing non-medical, personalized support so you can start and continue treatment as your doctor recommends.

Once you are prescribed a Amgen medication, you will work with your doctor to be enrolled into Amgen By Your Side and get matched with a Patient Access Liaison, or PAL. Or in some cases, a clinical nurse educator – a CNE.

Lindsey (PAL) talking to Khash: … I’m available to help you as you need for anything that might come up. I’m basically your advocate, your cheerleader, your friend. I’m here to support you through the entire journey.

Khash: My primary care physician said, “We’re going to have a Patient Access Liaison get in contact with you to discuss it further with you, and tell you all the pluses, minuses and all that stuff. Lindsey, really took the time to explain it all to me, including the commitment it’s going to take on my side to get this done.

Kelly, Narrator: A PAL is your partner to support and champion you while accomplishing your treatment goals. Some of the ways your PAL can support you include:
- Learning about insurance coverage and the approval process
- Understanding potential costs or cost assistance options
- Sharing additional resources, connect to advocacy groups, or connect with others if interested

Roxie: I did work with the Patient Access Liaison, more commonly known as PALs, and she kept in touch with me. I was really worried about insurance and about out-of-pocket cost. Although I was willing to do whatever it took. She checked out my insurances and I am so blessed because it was 100% covered.

Randi: They assigned me a Patient Access Liaison after I was approved for treatment and just helped guide me through the process as far as what to expect, the process that I was going to go through and just to be there for general support for me.

Melanie: She really took the time to explain everything and go through it and has been there for me for every single question ever since.

Kelly, Narrator: With everything you and your caregivers have going on, it can be difficult to fit treatment into your routine. Your PAL can help you understand what to expect at the start of treatment, how treatment can fit into your routine and send reminders to help you stay on track.

Carol (PAL): I want them to understand that I will be a point person for them. First and foremost, I’m there to listen and also let them know I’m there to support them through the process. And ultimately to empower them.

Latoya: They remind you of things that you typically forget. Even like when it comes to testing kits, you know. I was able to work out a plan. The PAL also will also make sure, like when it’s time to renew insurance, that at the end of the year you know, they shoot you a text messages to call. So I think they’re a great resource. They really are.

Melanie: They call me to do refills earlier than I need them so that I don’t run out of the medication.

Carol (PAL): We don’t want patients to feel that they’re just out there alone and floating in the space of the unknown. They can reach out to us at any time. We’re always available to them.

Kelly, Narrator: The Amgen By Your Side team can also help you become more comfortable with your diagnosis, even visiting to teach you hands-on how to take your medication and help you find medicine in case of an emergency.

Jerry (CNE): As a Clinical Nurse Educator my responsibility and my job is to make sure that our patients are well taken care of and that their needs are met. We also have communication with their primary doctors to make sure that they know and they are up-to-date in their treatment.

Shannon (CNE): I teach them about lifestyle modifications needed to stay healthy, a lot of disease state education.

Kelly, Narrator: We can also help connect you with a peer mentor, who are other Amgen patients that are going through a similar experience.

Randi: I may talk to three or four newly diagnosed patients a week. They want to know what the experience was like for me.

Kelly, Narrator: Amgen By Your Side also has many other resources available to patients and caregivers through our website, AmgenByYourSide.com. There you’ll find information about enrollment, treatment cost assistance options, treatment planning, and many other resources to assist you during your treatment experience.

In the end, Amgen By Your Side is designed to be just that …. by your side.

Melanie: I was so happy because I was so scared. She was there from the very beginning, I am trying to manage this disease by myself, but I’m not really by myself because I have these people in my corner that are available to me at any time.

Roxanne: After being so dismissed and feeling like I was doing this by myself, it was so helpful to have somebody who understood, who knew it. It gave me hope and it let me know that at some point, I was going to be able to go on with my life and not be held back by this anymore.

Hello, today I want to talk to you about Understanding Urea Cycle Disorders and Your RAVICTI Treatment. First, let's talk about Urea Cycle Disorders. What is a Urea Cycle Disorder?

A urea cycle disorder, or UCD, is a rare inherited condition where toxic levels of waste called ammonia build up in the blood and cause damage throughout the body.

Ammonia is released when the body digests protein from food.

Normally, the liver makes enzymes that break down the ammonia into urea. The body then gets rid of urea through urine.

In people with a UCD, these enzymes don’t work right, so ammonia builds up in the blood.

High levels of ammonia in the blood can make you very sick and cause serious health problems. A low-protein diet and supplements can help keep ammonia levels down, but sometimes this isn’t enough.

Adding RAVICTI can help keep ammonia at a safe level in the blood.

RAVICTI is slowly broken down by a naturally-occurring enzyme found in the digestive tract.

RAVICTI passes through the stomach and starts to slowly break down in the intestine. Once it breaks down, it can start getting to work.

A part of RAVICTI then binds to ammonia molecules to form a RAVICTI/ammonia complex that is excreted in the urine.

When taken correctly, RAVICTI works to keep removing extra ammonia throughout the entire day. RAVICTI may cause side effects. The most common side effects of RAVICTI in adults include: diarrhea, gas, headache, abdomen (stomach) pain, vomiting, tiredness, decreased appetite, indigestion or heartburn.

So how do you take RAVICTI? RAVICTI is a liquid that you take by mouth with a syringe or dosing cup 3 or more times a day with a low-protein diet and in some cases dietary supplements.

It’s important to take RAVICTI exactly as your doctor tells you in order to keep the ammonia in your body at a safe level.

Set reminders so you don’t forget to take your dose...and keep track of when you do take it.

A UCD is a lifelong disease that can cause organ damageand other very serious health problems over time without proper treatment. So even if you’re feeling fine, it’s important to continue taking your Ravicti to help prevent toxic buildup of ammonia in the blood. Talk to your doctor for more information and to help create a routine that works for you.

USE and IMPORTANT SAFETY INFORMATION

What is the most important information I should know about RAVICTI?

RAVICTI may cause serious side effects, including:

Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI: 

• sleepiness 
• lightheadedness 
• change in taste 
• problems with hearing 
• confusion 
• problems with memory
• worsening of numbness, tingling, or burning in your hands or feet  
• headache 
• feeling very tired (fatigue) 
• nausea 
• vomiting 

Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.

What is RAVICTI?

• RAVICTI (glycerol phenylbutyrate) Oral Liquid is a prescription medicine used for long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI should be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI must be used along with a low-protein diet and in some cases dietary supplements. 
• RAVICTI is not used for the acute treatment of hyperammonemia in people with UCD.
• It is not known if RAVICTI is safe and effective for the treatment of N-acetylglutamate synthase (NAGS) deficiency.

Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have wheezing, shortness of breath, cough, low blood pressure, flushing, nausea or a rash while taking RAVICTI.

Before taking RAVICTI, tell your doctor about all of your medical conditions, including if you:

• have liver or kidney problems.
• have pancreas or bowel (intestine) problems
• are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. If you become pregnant during treatment with RAVICTI, call Horizon at 1‐866‐479‐6742 to report the pregnancy.
• are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

What are possible side effects of RAVICTI?
RAVICTI may cause serious side effects, including:

• See “What is the most important information I should know about RAVICTI?”

The most common side effects of RAVICTI in adults include:

• Have liver or kidney problems. 
• Have pancreas or bowel (intestine) problems. 
• Are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. 
  • Pregnancy Registry: There is a Pregnancy Registry for women who take RAVICTI just before becoming pregnant or who become pregnant during treatment with RAVICTI. The purpose of this registry is to collect information about the health of you and your baby. Talk to your doctor about how you can join the Pregnancy Registry. For more information about this registry, call 1-855-823-2595 or visit www.ucdregistry.com.
• Are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI. 

What are possible side effects of RAVICTI?

RAVICTI may cause serious side effects, including:

• See “What is the most important information I should know about RAVICTI?”

 The most common side effects of RAVICTI in adults include:

• diarrhea
• gas
• headache
• abdomen (stomach) pain
• vomiting
• tiredness
• decreased appetite
• indigestion or heartburn 

The most common side effects of RAVICTI in children 2 years to 17 years of age include:

• upper abdomen (stomach) pain
• rash
• nausea
• vomiting
• diarrhea
• decreased appetite
• headache 

The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:

• low white blood cell count (neutropenia)
• vomiting
• constipation
• diarrhea
• fever
• reduced food intake
• cough
• stuffy nose
• runny nose
• skin rash
• small round bumps on the skin 

The most common side effects of RAVICTI in children less than 2 months of age include:

• vomiting
• rash
• gastroesophageal reflux
• increased levels of liver enzymes in the blood
• decreased appetite and reduced food intake
• low red blood cell count (anemia)
• cough
• loss of too much body fluid (dehydration)
• too much acid in the blood (acidosis)
• high blood platelet count (thrombocytosis)
• low blood platelet count (thrombocytopenia)
• low blood neutrophil count (type of white blood cell) (neutropenia)
• high white blood cell count (lymphocytosis)
• diarrhea
• gas
• constipation
• fever
• drowsiness (lethargy)
• irritability
• agitation

These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional important safety information, see the Medication Guide available at RAVICTI.com and discuss with your doctor.

Voiceover:

USE and IMPORTANT SAFETY INFORMATION

What is the most important information I should know about RAVICTI?

RAVICTI may cause serious side effects, including:

Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI:

• sleepiness
• lightheadedness
• change in taste
• problems with hearing
• confusion
• problems with memory
• worsening of numbness, tingling, or burning in your hands or feet
• headache
• feeling very tired (fatigue)
• nausea
• vomiting

Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.

Amy:

Mya was diagnosed at 6 months old. Our first step was low-protein diet. And she was just on that until about a year. At a year, we added some supplements. At 2 years, we had to add a medication, an ammonia scavenger.

The ammonia scavenger she was on could leave a bad taste in the mouth.

It was challenging to just flat out get her to take it.

And I thought there has to be another treatment. I was willing to try something new.

So I went to the Internet, and I searched and I searched, and I found RAVICTI. And I thought, I have to get my child on this.

I did talk to my doctor about starting RAVICTI.

I had found most of the information online, so I pretty much sent him a link and said, "Here's this information." And he responded, "Great. I support you."

RAVICTI may not be a fit for everybody. For Mya specifically, it is convenient because it’s tasteless, it’s odorless. Mya really doesn’t mind taking it.

For us, starting RAVICTI was pretty easy.

It was easy for her to take and the routine was the same, cause she still got the RAVICTI at the same time every day that she got the other one. It was just a different medication.

Every family’s experience is different, but for us Mya has been on RAVICTI for almost 6 years and we continue to like the convenience.

USE and IMPORTANT SAFETY INFORMATION

What is the most important information I should know about RAVICTI?

RAVICTI may cause serious side effects, including:

Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI: 

• sleepiness 
• lightheadedness 
• change in taste 
• problems with hearing 
• confusion 
• problems with memory
• worsening of numbness, tingling, or burning in your hands or feet  
• headache 
• feeling very tired (fatigue) 
• nausea 
• vomiting 

Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.

What is RAVICTI?

• RAVICTI (glycerol phenylbutyrate) Oral Liquid is a prescription medicine used for long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI should be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI must be used along with a low-protein diet and in some cases dietary supplements. 
• RAVICTI is not used for the acute treatment of hyperammonemia in people with UCD.
• It is not known if RAVICTI is safe and effective for the treatment of N-acetylglutamate synthase (NAGS) deficiency.

Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have wheezing, shortness of breath, cough, low blood pressure, flushing, nausea or a rash while taking RAVICTI.

Before taking RAVICTI, tell your doctor about all of your medical conditions, including if you:

• have liver or kidney problems.
• have pancreas or bowel (intestine) problems
• are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. If you become pregnant during treatment with RAVICTI, call Amgen at 1‐866‐479‐6742 to report the pregnancy.
• are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

What are possible side effects of RAVICTI?
RAVICTI may cause serious side effects, including:

• See “What is the most important information I should know about RAVICTI?”

The most common side effects of RAVICTI in adults include:

• Have liver or kidney problems. 
• Have pancreas or bowel (intestine) problems. 
• Are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. 
  • Pregnancy Registry: There is a Pregnancy Registry for women who take RAVICTI just before becoming pregnant or who become pregnant during treatment with RAVICTI. The purpose of this registry is to collect information about the health of you and your baby. Talk to your doctor about how you can join the Pregnancy Registry. For more information about this registry, call 1-855-823-2595 or visit www.ucdregistry.com.
• Are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI. 

What are possible side effects of RAVICTI?

RAVICTI may cause serious side effects, including:

• See “What is the most important information I should know about RAVICTI?”

 The most common side effects of RAVICTI in adults include:

• diarrhea
• gas
• headache
• abdomen (stomach) pain
• vomiting
• tiredness
• decreased appetite
• indigestion or heartburn 

The most common side effects of RAVICTI in children 2 years to 17 years of age include:

• upper abdomen (stomach) pain
• rash
• nausea
• vomiting
• diarrhea
• decreased appetite
• headache 

The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:

• low white blood cell count (neutropenia)
• vomiting
• constipation
• diarrhea
• fever
• reduced food intake
• cough
• stuffy nose
• runny nose
• skin rash
• small round bumps on the skin 

The most common side effects of RAVICTI in children less than 2 months of age include:

• vomiting
• rash
• gastroesophageal reflux
• increased levels of liver enzymes in the blood
• decreased appetite and reduced food intake
• low red blood cell count (anemia)
• cough
• loss of too much body fluid (dehydration)
• too much acid in the blood (acidosis)
• high blood platelet count (thrombocytosis)
• low blood platelet count (thrombocytopenia)
• low blood neutrophil count (type of white blood cell) (neutropenia)
• high white blood cell count (lymphocytosis)
• diarrhea
• gas
• constipation
• fever
• drowsiness (lethargy)
• irritability
• agitation

These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional important safety information, see the Medication Guide available at RAVICTI.com and discuss with your doctor.

Voiceover:

USE and IMPORTANT SAFETY INFORMATION

What is the most important information I should know about RAVICTI?

RAVICTI may cause serious side effects, including:

Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI:

• sleepiness
• lightheadedness
• change in taste
• problems with hearing
• confusion
• problems with memory
• worsening of numbness, tingling, or burning in your hands or feet
• headache
• feeling very tired (fatigue)
• nausea
• vomiting

Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.

David:

Before RAVICTI the medicine that they were taking was burdensome. I could not leave our house without a backpack. And that backpack, it had the medicine in it, but it also had everything I needed to prepare the medicine.

It formed our life. Everywhere we went, we’re connected to the medicine.

And it took a lot of time to prepare, and you had to measure and mix and there was so much of that.

So my life wasn’t revolving around what we were doing. Everything we did revolved around taking medicine.

Isaac:

My mom was taking the pills. I was taking the powder. It took me about 15 minutes per day just to take one round of medicine.

Patricia:

The other medication involved swallowing up to 39 pills a day. And I’m at work, and I’m in front of my students or my coworkers trying to down all these pills with my lunch.

Isaac:

The most challenging thing was definitely the taste. I’m glad that RAVICTI’s tasteless.

When I first started RAVICTI, I was, of course, nervous. But as I kept on taking it and taking it, I was noticing that it’s very convenient.

With the RAVICTI, all I gotta do is just measure out my dose, just take it. So it’s pretty easy for me to just take care of my own medication.

Patricia:

I know RAVICTI is not always going to work for everybody. But for myself my ammonia levels are well maintained.

David:

Not everyone is this way, but for us, RAVICTI made a huge difference. We have a small little pack we go out with.

Isaac:

It’s just a little bottle. You can either have a little carrying case or just even carry it in your pocket, as long as you’re careful. So, it is very convenient to just take wherever you need.

David:

They simply measure it, and they take it right there on the spot, and we move forward.

USE and IMPORTANT SAFETY INFORMATION

What is the most important information I should know about RAVICTI?

RAVICTI may cause serious side effects, including:

Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI: 

• sleepiness 
• lightheadedness 
• change in taste 
• problems with hearing 
• confusion 
• problems with memory
• worsening of numbness, tingling, or burning in your hands or feet  
• headache 
• feeling very tired (fatigue) 
• nausea 
• vomiting 

Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.

What is RAVICTI?

• RAVICTI (glycerol phenylbutyrate) Oral Liquid is a prescription medicine used for long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI should be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI must be used along with a low-protein diet and in some cases dietary supplements. 
• RAVICTI is not used for the acute treatment of hyperammonemia in people with UCD.
• It is not known if RAVICTI is safe and effective for the treatment of N-acetylglutamate synthase (NAGS) deficiency.

Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have wheezing, shortness of breath, cough, low blood pressure, flushing, nausea or a rash while taking RAVICTI.

Before taking RAVICTI, tell your doctor about all of your medical conditions, including if you:

• have liver or kidney problems.
• have pancreas or bowel (intestine) problems
• are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. If you become pregnant during treatment with RAVICTI, call Amgen at 1‐866‐479‐6742 to report the pregnancy.
• are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

What are possible side effects of RAVICTI?
RAVICTI may cause serious side effects, including:

• See “What is the most important information I should know about RAVICTI?”

The most common side effects of RAVICTI in adults include:

• Have liver or kidney problems. 
• Have pancreas or bowel (intestine) problems. 
• Are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. 
  • Pregnancy Registry: There is a Pregnancy Registry for women who take RAVICTI just before becoming pregnant or who become pregnant during treatment with RAVICTI. The purpose of this registry is to collect information about the health of you and your baby. Talk to your doctor about how you can join the Pregnancy Registry. For more information about this registry, call 1-855-823-2595 or visit www.ucdregistry.com.
• Are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI. 

What are possible side effects of RAVICTI?

RAVICTI may cause serious side effects, including:

• See “What is the most important information I should know about RAVICTI?”

 The most common side effects of RAVICTI in adults include:

• diarrhea
• gas
• headache
• abdomen (stomach) pain
• vomiting
• tiredness
• decreased appetite
• indigestion or heartburn 

The most common side effects of RAVICTI in children 2 years to 17 years of age include:

• upper abdomen (stomach) pain
• rash
• nausea
• vomiting
• diarrhea
• decreased appetite
• headache 

The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:

• low white blood cell count (neutropenia)
• vomiting
• constipation
• diarrhea
• fever
• reduced food intake
• cough
• stuffy nose
• runny nose
• skin rash
• small round bumps on the skin 

The most common side effects of RAVICTI in children less than 2 months of age include:

• vomiting
• rash
• gastroesophageal reflux
• increased levels of liver enzymes in the blood
• decreased appetite and reduced food intake
• low red blood cell count (anemia)
• cough
• loss of too much body fluid (dehydration)
• too much acid in the blood (acidosis)
• high blood platelet count (thrombocytosis)
• low blood platelet count (thrombocytopenia)
• low blood neutrophil count (type of white blood cell) (neutropenia)
• high white blood cell count (lymphocytosis)
• diarrhea
• gas
• constipation
• fever
• drowsiness (lethargy)
• irritability
• agitation

These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional important safety information, see the Medication Guide available at RAVICTI.com and discuss with your doctor.

Amy:

It took me a few times, but now I’m that hospital mom momma bear. …After the lab techs come up, and they poke her twice…I’m the mom that’s not afraid to ask for the anesthesiologist because…if they waste 6 different poke sites, just trying to start one IV, we’re gonna be in trouble for that whole hospitalization.

And I had had different experiences with doctors and hospitals, so I knew right away that if you walk in and you act like you own the meeting, you own the meeting. And that’s what I did.

You have to be aware of what’s going on. And you know your child best.

David:

Thank God for doctors.

…They’re trying to do their best to serve you… So you have to treat them well. But at the same time you have to be an advocate when you present to a, ah, an emergency room or a medical situation with your child.

You won't get it from yelling. Don’t do anything like that. Just persistently be an advocate for your child.

You have to do it as a parent, and we’ve been teaching our son, to be his own advocate.

Do it sternly, firmly, consistently. Do not back down. If you do not get results, find somewhere where you can.

Hanging out with friends is my RAVictory because my friends are a big part of my life and I feel very happy when I get to spend time with them.

To manage my ammonia levels, I eat low-protein diets and I take my vitamins and medicine.

I take RAVICTI three times a day, after breakfast, after lunch and after dinner. And I take it with a cup of juice or water.

She doesn’t worry about having to be refrigerated and the RAVICTI comes in a small bottle. She carries it when we have to go out for the day.

What motivates me to achieve my RAVictories and keep my ammonia levels low is that I don’t want to have my family see me in the hospital.

Emily’s RAVictory would be taking her medicine. Just being a teenager. You know, doing sports.

Playing her flute. Doing personal things that she wants to do. And for me, that’s her RAVictory.

When I think of Emily, I think of someone really strong, beautiful, inside and out. Someone very sincere and brave. And I don’t know what I’d do without you.

When I look to the future, the RAVictories I hope to achieve are going to college, traveling to Hawaii, and cooking more low-protein meals.

USE and IMPORTANT SAFETY INFORMATION

What is the most important information I should know about RAVICTI?

RAVICTI may cause serious side effects, including:

Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI:

• sleepiness
• lightheadedness
• change in taste
• problems with hearing
• confusion
• problems with memory
• worsening of numbness, tingling, or burning in your hands or feet
• headache
• feeling very tired (fatigue)
• nausea
• vomiting

Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.

What is RAVICTI?

• RAVICTI (glycerol phenylbutyrate) Oral Liquid is a prescription medicine used for long-term management of highblood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI should be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI must be used along with a low-protein diet and in some cases dietary supplements.
• RAVICTI is not used for the acute treatment of hyperammonemia in people with UCD.
• It is not known if RAVICTI is safe and effective for the treatment ofN-acetylglutamate synthase (NAGS) deficiency.

Do not take RAVICTI if youare allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have wheezing, shortness of breath, cough, low blood pressure, flushing, nausea or a rash while taking RAVICTI.

Before taking RAVICTI, tell your doctor about all of your medical conditions, including if you:

• have liver or kidney problems.
• have pancreas or bowel (intestine) problems
• are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. If you become pregnant during treatment with RAVICTI, call Amgen at 1‐866‐479‐6742 to report the pregnancy.
• are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

What are possible side effects of RAVICTI?
RAVICTI may cause serious side effects, including:

• See “What is the most important information I should know about RAVICTI?”

The most common side effects of RAVICTI in adults include:

• Have liver or kidney problems.
• Have pancreas or bowel (intestine) problems.
• Are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby.
  • Pregnancy Registry: There is a Pregnancy Registry for women who take RAVICTI just before becoming pregnant or who become pregnant during treatment with RAVICTI. The purpose of this registry is to collect information about the health of you and your baby. Talk to your doctor about how you can join the Pregnancy Registry. For more information about this registry, call 1-855-823-2595 or visit www.ucdregistry.com.
• Are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

What are possible side effects of RAVICTI?

RAVICTI may cause serious side effects, including:

• See “What is the most important information I should know about RAVICTI?”

The most common side effects of RAVICTI in adults include:

• diarrhea
• gas
• headache
• abdomen (stomach) pain
• vomiting
• tiredness
• decreased appetite
• indigestion or heartburn

The most common side effects of RAVICTI in children 2 years to 17 years of age include:

• upper abdomen (stomach) pain
• rash
• nausea
• vomiting
• diarrhea
• decreased appetite
• headache

The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:

• low white blood cell count (neutropenia)
• vomiting
• constipation
• diarrhea
• fever
• reduced food intake
• cough
• stuffy nose
• runny nose
• skin rash
• small round bumps on the skin

The most common side effects of RAVICTI in children less than 2 months of age include:

• vomiting
• rash
• gastroesophageal reflux
• increased levels of liver enzymes in the blood
• decreased appetite and reduced food intake
• low red blood cell count (anemia)
• cough
• loss of too much body fluid (dehydration)
• too much acid in the blood (acidosis)
• high blood platelet count (thrombocytosis)
• low blood platelet count (thrombocytopenia)
• low blood neutrophil count (type of white blood cell) (neutropenia)
• high white blood cell count (lymphocytosis)
• diarrhea
• gas
• constipation
• fever
• drowsiness (lethargy)
• irritability
• agitation

These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional important safety information, seethe Medication Guideavailable at RAVICTI.comand discuss with your doctor.

Finding out that your baby or toddler has a urea cycle disorder, also called a “UCD,” can be scary and overwhelming. There is a lot of information to process and understand.

One thing you’ll learn right away is the importance of managing the amount of ammonia in your child’s blood.

There are several things you can do to help prevent your child’s blood ammonia levels from getting too high, like feeding them a low-protein diet and monitoring their activity.

There are also treatments that can help keep your child’s ammonia levels under control over a long period of time.

RAVICTI (glycerol phenylbutyrate) Oral Liquid is a treatment option for babies and toddlers.

USE and IMPORTANT SAFETY INFORMATION

What is the most important information I should know about RAVICTI? RAVICTI may cause serious side effects, including: Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI:

• sleepiness
• lightheadedness
• change in taste
• problems with hearing
• confusion
• problems with memory
• worsening of numbness, tingling, or burning in your hands or feet
• headache
• feeling very tired (fatigue)
• nausea
• vomiting

Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.

Please listen to the Important Safety Information in this video

Studies have shown that RAVICTI helped manage ammonia levels in babies and toddlers younger than 2 years of age.

SELECT IMPORTANT SAFETY INFORMATION

What is RAVICTI?

• RAVICTI (glycerol phenylbutyrate) Oral Liquid is a prescription medicine used for long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI should be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI must be used along with a low-protein diet and in some cases dietary supplements.

Take RAVICTI with food or formula.

In an infant who is breastfeeding, give RAVICTI just prior to breastfeeding.

These studies included babies and toddlers who had been using other medicine to treat their UCDs, as well as toddlers who had not been using any medicine at all.

SELECT IMPORTANT SAFETY INFORMATION

What is RAVICTI? (cont'd)

• RAVICTI is not used for the acute treatment of hyperammonemia in people with UCD.
• It is not known if RAVICTI is safe and effective for the treatment of N-acetylglutamate synthase (NAGS) deficiency.

RAVICTI is a prescription medicine, and it is the only FDA-approved liquid medicine of its kind.

Always take RAVICTI exactly as your doctor prescribes.

This information is not comprehensive. To learn more, talk to your healthcare provider or pharmacist.

If you miss a dose of RAVICTI, take it as soon as possible.

Do not take 2 doses of RAVICTI at the same time.

If you miss more than 1 dose and are not feeling well, call your doctor or nurse right away.

RAVICTI is taken by mouth, and can also be given through a feeding tube, if necessary. It is taken 3 or more times a day with food or formula and has little to no taste.

Babies and toddlers using RAVICTI must eat a low-protein diet and, in many cases, take dietary supplements to help manage ammonia levels.

SELECT IMPORTANT SAFETY INFORMATION

What is RAVICTI? (cont'd)

Do not take RAVICTI if you

are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have wheezing, shortness of breath, cough, low blood pressure, flushing, nausea or a rash while taking RAVICTI.

RAVICTI should not be used in children of any age if they are allergic to phenylbutyrate.

Managing a UCD requires some lifestyle changes, but there are treatment options available to help to keep your child’s ammonia at a safe level over time.

If your baby or toddler has been diagnosed with a UCD, talk to your doctor to learn more about how RAVICTI might help you and your family.

USE and IMPORTANT SAFETY INFORMATION

What is the most important information I should know about RAVICTI?

RAVICTI may cause serious side effects, including:

Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI: 

• sleepiness 
• lightheadedness 
• change in taste 
• problems with hearing 
• confusion 
• problems with memory
• worsening of numbness, tingling, or burning in your hands or feet  
• headache 
• feeling very tired (fatigue) 
• nausea 
• vomiting 

Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.

What is RAVICTI?

• RAVICTI (glycerol phenylbutyrate) Oral Liquid is a prescription medicine used for long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI should be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI must be used along with a low-protein diet and in some cases dietary supplements. 
• RAVICTI is not used for the acute treatment of hyperammonemia in people with UCD.
• It is not known if RAVICTI is safe and effective for the treatment of N-acetylglutamate synthase (NAGS) deficiency.

Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have wheezing, shortness of breath, cough, low blood pressure, flushing, nausea or a rash while taking RAVICTI.

Before taking RAVICTI, tell your doctor about all of your medical conditions, including if you:

• have liver or kidney problems.
• have pancreas or bowel (intestine) problems
• are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. If you become pregnant during treatment with RAVICTI, call Horizon at 1‐866‐479‐6742 to report the pregnancy.
• are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

What are possible side effects of RAVICTI?
RAVICTI may cause serious side effects, including:

• See “What is the most important information I should know about RAVICTI?”

The most common side effects of RAVICTI in adults include:

• Have liver or kidney problems. 
• Have pancreas or bowel (intestine) problems. 
• Are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. 
  • Pregnancy Registry: There is a Pregnancy Registry for women who take RAVICTI just before becoming pregnant or who become pregnant during treatment with RAVICTI. The purpose of this registry is to collect information about the health of you and your baby. Talk to your doctor about how you can join the Pregnancy Registry. For more information about this registry, call 1-855-823-2595 or visit www.ucdregistry.com.
• Are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI. 

What are possible side effects of RAVICTI?

RAVICTI may cause serious side effects, including:

• See “What is the most important information I should know about RAVICTI?”

 The most common side effects of RAVICTI in adults include:

• diarrhea
• gas
• headache
• abdomen (stomach) pain
• vomiting
• tiredness
• decreased appetite
• indigestion or heartburn 

The most common side effects of RAVICTI in children 2 years to 17 years of age include:

• upper abdomen (stomach) pain
• rash
• nausea
• vomiting
• diarrhea
• decreased appetite
• headache 

The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:

• low white blood cell count (neutropenia)
• vomiting
• constipation
• diarrhea
• fever
• reduced food intake
• cough
• stuffy nose
• runny nose
• skin rash
• small round bumps on the skin 

The most common side effects of RAVICTI in children less than 2 months of age include:

• vomiting
• rash
• gastroesophageal reflux
• increased levels of liver enzymes in the blood
• decreased appetite and reduced food intake
• low red blood cell count (anemia)
• cough
• loss of too much body fluid (dehydration)
• too much acid in the blood (acidosis)
• high blood platelet count (thrombocytosis)
• low blood platelet count (thrombocytopenia)
• low blood neutrophil count (type of white blood cell) (neutropenia)
• high white blood cell count (lymphocytosis)
• diarrhea
• gas
• constipation
• fever
• drowsiness (lethargy)
• irritability
• agitation

These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional important safety information, see the Medication Guide available at RAVICTI.com and discuss with your doctor.

Isaac: Growing up with a UCD was interesting to say the least. I got a much different perspective than a lot of other kids. I always had to be careful. I had to stay in. I was homeschooled. So, I’d say I got a lot more creativity than most people.

I’m Isaac, and I’m living with OTC.

My family consists of me, my father, David, and my mother, Patricia.

Right now I’m just taking the core program in a community college in order to take all the basic classes like math, history, English, and all that.

I’m hoping to get into the video game design business. So I’m hoping to become a game designer.

I learned the hard way that I had UCD. It’s just a whole series of events that led to me actually falling into a coma that lasted for a week straight, and when I woke up, I was told that I had UCD.

It’s something I’ve been living with my entire life. It’s part of my everyday routine. At some point you just say, “Well, just bring on life. I’m ready to take you on.”

I definitely think when I started to take care of myself, my parents felt a lot more confident in letting me do my own thing, that I was more of an adult. I was proving that I was able to take care of myself, handle myself, I knew what I was doing.

You’re your own biggest ally in this.

I became a UCD Mentor because I feel like there are people out there that do need help and need to have someone to rely on and to give them some advice and all that. So with the experience I had, I figured it might be helpful for me to throw my hat into the ring.

I’m a mentor.

I’m here for you.

Let’s talk.

USE and IMPORTANT SAFETY INFORMATION

What is the most important information I should know about RAVICTI?

RAVICTI may cause serious side effects, including:
Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI:

Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.

What is RAVICTI?

Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have wheezing, shortness of breath, cough, low blood pressure, flushing, nausea or a rash while taking RAVICTI.

Before taking RAVICTI, tell your doctor about all of your medical conditions, including if you:

These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional Important Safety Information, click here for the Medication Guide and discuss with your doctor.

Patricia: The challenges of being both the caregiver and a patient who has a urea cycle disorder, that can be quite a lot.

My name is Patricia. I’m a mom, I’m a wife, and I’m a caregiver. I have UCD, and my son also has urea cycle disorder.

We have ornithine transcarbamylase deficiency.

I first learned that I had a urea cycle disorder when my son was diagnosed.

When you first get that diagnosis of a urea cycle disorder, it feels like your world has been turned upside down. I have to say, though, that as devastating as the diagnosis was, it was a little bit of a relief. I felt hope, because for the first time so many unanswered things throughout my life and my family’s life finally made sense.

As a parent with a child with urea cycle disorder, you tend to have a little bit more on your plate.

The one thing I would say to that caregiver is don’t lose hope. You can do this. There are many people like myself who are here, ready to help. You’re not alone.

It’s hard at the end to take a little time away for yourself. But if you can’t take care of yourself, how can you take care of the ones you love?

I became a mentor because I feel like it’s the least I can do to pay it forward. I would love to be able to help somebody walk this walk.

I’m a UCD mentor. I’m here for you. Let’s talk.

USE and IMPORTANT SAFETY INFORMATION

What is the most important information I should know about RAVICTI?

RAVICTI may cause serious side effects, including:
Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI:

Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.

What is RAVICTI?

Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have wheezing, shortness of breath, cough, low blood pressure, flushing, nausea or a rash while taking RAVICTI.

Before taking RAVICTI, tell your doctor about all of your medical conditions, including if you:

These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional Important Safety Information, click here for the Medication Guide and discuss with your doctor.

David: We have hope. We have a community. The hardest thing about UCD is not knowing real people that are going through it. And, with the mentor program you’ll be able to talk to another person.

I’m David, and I’m a caregiver for my wife and son, who have urea cycle disorder.

I learned about Isaac having UCD when he was 8 years old. He started getting lethargic and started not feeling well. He started getting worse and worse. And so we drove him to the emergency room. And 4 hours later my son’s in critical condition. So it was at that point that he was diagnosed.

So we started getting treatment for it. And the doctor turns to my wife and goes, “And you? Has anyone treated you?”

Because it’s X-linked. It’s handed from moms down to the children.

And all of a sudden, it’s just like, oh, my gosh, this is what we’ve been wrestling with. It was, it was like the world opened up. By getting the diagnosis. It sounds weird, because they’re saying you’re sick. But to get the diagnosis was a relief.

There’s no one who really understands unless someone that has done that and been there. And that’s why I’m making myself available if some people just need to talk. If nothing else, I understand.

My son’s now in college. My wife is getting more lovely every year. And we’ve been at it for 30 years, we’re looking forward to what’s in front of us.

We’ll treat this every single day. But we won’t let it conquer us.

I am a mentor.

I am here for you.

Let’s talk.

USE and IMPORTANT SAFETY INFORMATION

What is the most important information I should know about RAVICTI?

RAVICTI may cause serious side effects, including:
Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI:

Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.

What is RAVICTI?

Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have wheezing, shortness of breath, cough, low blood pressure, flushing, nausea or a rash while taking RAVICTI.

Before taking RAVICTI, tell your doctor about all of your medical conditions, including if you:

These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional Important Safety Information, click here for the Medication Guide and discuss with your doctor.

Today, we’re going to talk about how you can care for others while also taking care of yourself. Here’s what we mean. 

Think about a time when a friend of yours was struggling. How did you respond in that situation? Now, think about a time when YOU were struggling. How did you respond in that situation… to yourself? There was likely a difference. We tend to be much more compassionate with our friends while being tougher on ourselves. How can we treat ourselves with that same gentleness and care? 

In your role as a caregiver, when we put others first, we can forget to look after ourselves. The way to be a resilient caregiver is with self-compassion… treating yourself the same way you would treat a friend.

Now, what prevents us from self-compassion is the harsh critic whispering in our head. It says things like …

“You’ll never be able to do this” or

“You always mess this up.”

With self-compassion, you replace those mental judgments with thoughts a friend would comfort you with. Like …

“I see you’re doing your best.”

“The people you care for are in good hands with you.”

Or… “You’re a strong person for dealing with this for so long.”

Another way to practice self-compassion is with journaling. It doesn’t have to be formal. You can even just write in your phone. However you do it, use the three parts of self-compassion to process what you’re experiencing as a caregiver. 

1) Self-Kindness

Write kind, understanding words of comfort to yourself:

“It’s okay. You made a mistake. But it wasn’t the end of the world.”

2) Common Humanity

Write how the things you’re going through are connected to the larger human experience:

“Everyone makes mistakes. It’s how we learn.”

3) Mindfulness

Write about how you feel (embarrassed, sad, ashamed, or frightened) in a non-judgmental way:

“I got angry, overreacted, and was embarrassed afterwards.”

If you change the tone of your inner voice and journal regularly, self-compassion will make you more resilient and able to bounce back from life’s challenges.

And that’s important. Because the opportunity to be a caregiver may be one of the most fulfilling things you ever do.

But…to KEEP doing it, it’s important to be intentional about caring for yourself in the process.

People who have grit practice more than others. However, they don’t just do the same thing over and over again. Instead, they practice the areas they’re weak in. This can often be painful and hard. After all, doing something that you’re not good at can be tiring.

You can build grit by adopting a habit of daily practice, learning as you go and, and most importantly, moving through the challenging parts.

Sometimes it can even help to say out loud, “This is so frustrating because I’m challenging myself.”

'O' Stands for Outcome.

What is the specific outcome you want? This is more than the goal itself. IT’S WHAT YOU HOPE THAT GOAL GETS YOU. For example, a goal to take your medication everyday as prescribed could result in an outcome of having more freedom and less symptoms that get in the way. 

A common mistake when setting a goal is to only think about how great life will be after accomplishing it without considering what is currently holding us back.

A helpful skill is to think of the outcome you want and create a plan that will get you through any challenges that stand in your way.

‘A’ Stands for Achievable.

Think about the skills or abilities that are needed to achieve your goal. How can you make it practical and within reach? For example, reading one book per month is probably achievable. Becoming a professional NBA player may not be... because you may not have the ability or skill to achieve that goal.

You could set a goal to practice basketball one hour per day, though!

How will you know your plan is working? What are the things you (or others) could see that will let you know you are closer to achieving your goal?

Think of the way your smartphone tracks your steps and how you can compare the steps you took today to yesterday’s. You can compare week to week, or even month to month. Is it something within your control? Is it realistic? What is the time frame you are wanting to achieve this goal in? 

Rather than just thinking “I want to be healthy,” think of how you can frame it in a way that is time bound and within your control. For example, “Starting on Monday, after work, I will begin exercising 20 minutes a day, three times per week.”

A specific question you can ask to determine if your goals are achievable is to fill in the blank: I will know my plan is working if “blank.” What are the specific indicators that show you, and others, that you are closer to reaching your goal?

‘L’ Stands for Link.

Think again about the goal you want to achieve. Now think of something you really like to do that you could bundle with that goal. Perhaps it’s scrolling through social media posts, playing a game on your phone, or watching Netflix. Linking steps toward your goal with something you like is a way of doing what you want to do AND what you should be doing to achieve a specific goal.

The trick is that you must do the two things together. One shouldn’t happen without the other. Unlike doing something fun as a reward AFTER completing a task you’re not so fond of, this behavioral practice ties together something you like with completing necessary tasks.

So how does it work? If your goal is to spend an hour a day organizing and doing household chores so your weekends can be more relaxing.

You might bundle a not so fun task like laundry with watching your favorite Netflix show. Or maybe you’re trying to finish a paper and you decide to bundle this not so fun task with...a fancy coffee drink. 

But there’s one important catch. In order to stick to the plan and make this work, you have to have some self-control. If you reward yourself without doing what you should be doing, such as watching Netflix without doing laundry, the system will begin to fall apart.

‘S’ Stands for Steps.

Larger goals can be broken down into smaller goals.

Small steps together equal a giant leap. The trick is to break goals down into the smallest, most manageable steps you can.

Think about someone who wants to go on a long run but is out of shape. While it may be tempting to want to start on the run and simply see how far you can go, it can be more helpful to start small and track your progress.

Perhaps start by getting running shoes. Another step may be running around the block after dinner. Then you might build up to running around the block two times the next day and three times the next. This allows you to check off each goal along the way, which can keep you motivated. You can also reflect on where you’ve been by documenting your progress and sharing with friends or family.

So, to recap, here are the easy-to-remember skills in G.O.A.L.S.:

• Grit

• Outcome

• Achievable

• Link, and

• Steps

And using them is how to achieve the goals that matter to you. 

Narrator: If you’ve recently been prescribed a Horizon medicine, there are a few steps to the insurance approval process. This will look slightly different for each patient and the time it may take to get approval can vary.

Narrator: Fortunately, Horizon By Your Side, a patient support program designed specifically for you, will be there “by your side” every step of the way, to make the process as smooth as possible.

Narrator: When your health plan decides whether to cover a Horizon medication, their review process may include several steps.

Narrator: First – a benefits investigation. After your doctor prescribes your medicine and you provide permission through a patient consent form, a Horizon By Your Side team member will contact your health plan to review your coverage.

Your Patient Access Liaison, or PAL, or, in some cases, a Clinical Nurse Educator, a CNE will call you with information on the progress of your benefits investigation and review:

Whether the medicine is covered by your policy and prior authorization requirements.

Your estimated out-of-pocket costs and financial assistance that may be available to you

Narrator: Second – Prior Authorization or “PA”. While often needed, sometimes a “PA” may not be required. If a Prior Authorization IS required for you, this is a process your doctor must complete, describing the reasons you should be prescribed the medicine and why the costs should be covered.

Narrator: Third – Health Plan Decision – After receiving all required information, your health plan will determine whether it will cover your Horizon medicine. You and your doctor’s office should receive a written decision from the health plan.

If your health plan denies coverage, you can work with your doctor’s office to appeal this decision. The Horizon By Your Side Team can educate you and your doctor about the process

Narrator: Throughout the process, the Horizon By Your Side team will provide support by:

• Contacting your health plan to review your insurance coverage
• Providing your doctor with education on any requirements or PA decisions
• Going over alternative options you may use to access your medicine while the insurance review is underway
• Staying in touch with you throughout the process to keep you up to date on the status of the review.

Narrator: For more information on the insurance approval process and the services available to patients and healthcare providers from Horizon By Your Side, visit HorizonByYourSide.com

Welcome to the RAVICTI (glycerol phenylbutyrate) Oral Liquid instructional dosing video.

In this video you will see step-by-step instructions for the oral administration of RAVICTI for you or your child.

This video is intended to complement the instructions you have already received from your doctor. Always take RAVICTI exactly as directed by your doctor. 

Do not mix RAVICTI with formula or any other liquids.

Now, let’s get started. 

Your RAVICTI shipment includes 

a 25-milliliter bottle of RAVICTI, a reclosable bottle cap adapter, and an oral syringe.

When dosing RAVICTI, be sure to use the oral syringe provided with the product.

First, remove the childproof cap on the RAVICTI bottle. To do that, push down on the cap while twisting it to the left. 

Then, attach the reclosable bottle cap adapter onto the bottle. Put it on top of the bottle and twist it to the right.

Make sure it is secured tightly on the bottle.

While holding the RAVICTI bottle securely, place the tip of the oral syringe into the reclosable bottle cap adapter. 

Turn the bottle upside down with the oral syringe still inserted. 

Now you’re ready to fill the oral syringe with RAVICTI.

Withdraw the prescribed dose of RAVICTI with the dry oral syringe by pulling the plunger back.

Pull the plunger back until the first line of the black rubber stopper is even with the dosing mark. The dosing marks are on the barrel of the oral syringe. Match the dosing mark with the amount of medicine prescribed by your doctor. 

Then, turn the bottle upright again.

If there are large air bubbles, push the medicine back into the bottle.  Do this slowly. 

Then draw up the medicine again.

Once you have your oral syringe ready, place it into the mouth. Push the plunger to squirt the medicine directly into the mouth.  

Make sure all of the medicine is pushed out of the oral syringe and swallowed. 

Put the cap on the oral syringe. 

Drink liquid or eat some food right after taking RAVICTI. 

This helps ensure that all of the medicine is swallowed.

Close the tab on the reclosable bottle cap adapter. 

Make sure it’s closed tightly. 

After the last dose of the day, dispose of the oral syringe.  

Take the exact amount of RAVICTI Oral Liquid as instructed by your doctor.

Your doctor may change your dose if needed.

Take RAVICTI with food or formula.

In an infant who is breastfeeding, give RAVICTI just prior to breastfeeding.

Use a new reclosable bottle cap adapter with each new bottle of RAVICTI that is opened.

Use a new dry oral syringe to withdraw each prescribed dose of RAVICTI.

If you take too much RAVICTI, call your doctor or the Poison Control Center at 1-800-222-1222 or go to the nearest hospital emergency room right away.

Do not stop taking RAVICTI unless your doctor tells you to stop. 

If you miss a dose of RAVICTI, take it as soon as possible.

Do not take 2 doses of RAVICTI at the same time.

If you miss more than 1 dose and are not feeling well, call your doctor or nurse right away.  

If you still have questions about how to take RAVICTI with an oral syringe, please contact your doctor for more information.

If RAVICTI is in contact with water, it will become cloudy in appearance. If the contents are in contact with water or cloudy, then do not use the remaining RAVICTI and contact your prescribing doctor or pharmacy. 

Discard bottle and any remaining contents 28 days after opening. 

Ask your pharmacist for oral syringes and a reclosable bottle cap adapter for each bottle you receive if you do not have them.\

USE and IMPORTANT SAFETY INFORMATION

What is the most important information I should know about RAVICTI?

RAVICTI may cause serious side effects, including: Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI: 

• sleepiness 
• lightheadedness 
• change in taste 
• problems with hearing 
• confusion 
• problems with memory 
• worsening of numbness, tingling, or burning in your hands or feet  
• headache 
• feeling very tired (fatigue) 
• nausea 
• vomiting 

Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.

What is RAVICTI? 

• RAVICTI (glycerol phenylbutyrate) Oral Liquid is a prescription medicine used for long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI should be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI must be used along with a low-protein diet and in some cases dietary supplements. 
• RAVICTI is not used for the acute treatment of hyperammonemia in people with UCD.
• It is not known if RAVICTI is safe and effective for the treatment of N-acetylglutamate synthase (NAGS) deficiency.

Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have wheezing, shortness of breath, cough, low blood pressure, flushing, nausea or a rash while taking RAVICTI.

Before taking RAVICTI, tell your doctor about all of your medical conditions, including if you:

• have liver or kidney problems.
• have pancreas or bowel (intestine) problems.
• are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. If you become pregnant during treatment with RAVICTI, call Horizon at 1‐866‐479‐6742 to report the pregnancy.
• are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

What are possible side effects of RAVICTI?

RAVICTI may cause serious side effects, including:

• See “What is the most important information I should know about RAVICTI?”

The most common side effects of RAVICTI in adults include:

• diarrhea
• gas
• headache
• vomiting 
• tiredness
• decreased appetite
• indigestion or heartburn

The most common side effects of RAVICTI in children 2 years to 17 years of age include:

• upper abdomen (stomach) pain
• rash
• nausea
• vomiting
• diarrhea
• decreased appetite
• headache

The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:

• low white blood cell count (neutropenia)
• vomiting
• constipation
• diarrhea
• fever
• reduced food intake
• cough
• stuffy nose 
• runny nose
• skin rash
• small round bumps on the skin

The most common side effects of RAVICTI in children less than 2 months of age include:

• vomiting
• rash
• gastroesophageal reflux
• increased levels of liver enzymes in the blood
• decreased appetite and reduced food intake
• low red blood cell count (anemia)
• cough
• loss of too much body fluid (dehydration)
• too much acid in the blood (acidosis)
• high blood platelet count (thrombocytosis)
• low blood platelet count (thrombocytopenia) 
• low blood neutrophil count (type of white blood cell) (neutropenia)
• high white blood cell count (lymphocytosis)
• diarrhea
• gas
• constipation
• fever
• drowsiness (lethargy)
• irritability 
• agitation

These are not all of the possible   side effects of RAVICTI. Call your doctor for medical advice about  side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional Important Safety Information, please review the Medication Guide at RAVICTI.com and discuss with your doctor.

Welcome to the RAVICTI (glycerol phenylbutyrate) Oral Liquid instructional dosing video.

In this video, you will see step-by-step instructions for administration of RAVICTI if you or your child have a nasogastric or gastrostomy feeding tube.

If you can swallow liquids, it is recommended you take RAVICTI by mouth.

This video is intended to complement the instructions you have already received from your doctor. Always take RAVICTI exactly as directed by your doctor.

Do not mix RAVICTI with formula or any other liquids.

Now, let’s get started.

Your RAVICTI shipment includes:

a 25-milliliter bottle of RAVICTI, a reclosable bottle cap adapter, and an oral syringe.

When dosing RAVICTI, be sure to use a new dry oral syringe.

First, remove the childproof cap on the RAVICTI bottle. To do that, push down on the cap while twisting it to the left.

Then, attach the reclosable bottle cap adapter onto the bottle. Put it on top of the bottle and twist it to the right.

Make sure it is secured tightly on the bottle.

While holding the RAVICTI bottle securely, place the tip of the oral syringe into the reclosable bottle cap adapter.

Turn the bottle upside down with the oral syringe still inserted.

Now you’re ready to fill the oral syringe with RAVICTI.

Withdraw the prescribed dose of RAVICTI with the dry oral syringe by pulling the plunger back.

Pull the plunger back until the first line of the black rubber stopper is even with the dosing mark. The dosing marks are on the barrel of the oral dosing syringe. Match the dosing mark with the amount of medicine prescribed by your doctor.

Then, turn the bottle upright again.

If there are large air bubbles, push the medicine back into the bottle. Do this slowly.

Then draw up the medicine again.

Next, place the tip of the oral syringe into the smaller port of the feeding tube.

The smaller port of the nasogastric or gastrostomy feeding tube is used for medicine.

Ask your doctor if you are not sure which port to use.

Using the plunger of the oral dosing syringe, slowly and carefully push RAVICTI into the feeding tube.

Make sure all of the medicine is pushed out of the oral dosing syringe.

After you have pushed all of the RAVICTI into the feeding tube, remove the oral syringe, put the cap on the oral syringe, and set it aside.

Close the tab on the reclosable bottle cap adapter.

Make sure it’s closed tightly.

Use a separate large syringe to flush water into the feeding tube. A large syringe can be found in the box containing your feeding tube.

Make sure all of the water or formula drains through the feeding tube.

For patients who have a nasogastric tube or gastrostomy tube in place, give RAVICTI as follows:

• Use an oral syringe to withdraw the prescribed dosage of RAVICTI from the bottle.
• Place the tip of the syringe into the tip of the gastrostomy/nasogastric tube.
• Using the plunger of the syringe, push RAVICTI into the tube.
• Flush once with 10 mL of water or formula and allow the flush to drain.
• If needed, flush a second time with an additional 10 mL of water or formula to clear the tube.

You can use 1 oral syringe and 1 reclosable bottle cap adapter for all doses each day.

You can also choose to use a new oral syringe with each dose.

Do not rinse the reclosable bottle cap adapter or oral syringe between doses.

After the last dose of the day, dispose of the oral syringe.

Take the exact amount of RAVICTI Oral Liquid as instructed by your doctor.

Your doctor may change your dose if needed.

Take RAVICTI with food or formula.

In an infant who is breastfeeding, give RAVICTI just prior to breastfeeding.

Use a new reclosable bottle cap adapter with each new bottle of RAVICTI that is opened.

Use a new dry oral syringe to withdraw each prescribed dose of RAVICTI.

If you take too much RAVICTI, call your doctor or the Poison Control Center at 1-800-222-1222 or go to the nearest hospital emergency room right away.

Do not stop taking RAVICTI unless your doctor tells you to stop.

If you miss a dose of RAVICTI, take it as soon as possible.

Do not take 2 doses of RAVICTI at the same time.

If you miss more than 1 dose and are not feeling well, call your doctor or nurse right away.

If you still have questions about how to take RAVICTI with an oral syringe, please contact your doctor for more information.

1. For patients who require a volume of less than 1 mL per dose via nasogastric or gastrostomy tube, the delivered dosage may be less than anticipated due to adherence of RAVICTI to the plastic tubing. Therefore, these patients should be closely monitored using ammonia levels following initiation of RAVICTI dosing or dosage adjustments.

If RAVICTI is in contact with water, it will become cloudy in appearance.

If the contents are in contact with water or cloudy, then do not use the remaining RAVICTI and contact your prescribing doctor or pharmacy.

Discard bottle and any remaining contents 28 days after opening.

Ask your pharmacist for oral syringes and a reclosable bottle cap adapter for each bottle you receive if you do not have them.

USE and IMPORTANT SAFETY INFORMATION

What is the most important information I should know about RAVICTI?

RAVICTI may cause serious side effects, including:Nervous system side effects (Neurotoxicity)Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI:

• sleepiness
• lightheadedness
• change in taste
• problems with hearing
• confusion
• problems with memory
• worsening of numbness, tingling, or burning in your hands or feet
• headache
• feeling very tired (fatigue)
• nausea
• vomiting

Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.

What is RAVICTI?

• RAVICTI (glycerol phenylbutyrate) Oral Liquid is a prescription medicine used for long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI should be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI must be used along with a low-protein diet and in some cases dietary supplements.
• RAVICTI is not used for the acute treatment of hyperammonemia in people with UCD.
• It is not known if RAVICTI is safe and effective for the treatment of N-acetylglutamate synthase (NAGS) deficiency.

Do not take RAVICTI if youare allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have wheezing, shortness of breath, cough, low blood pressure, flushing, nausea or a rash while taking RAVICTI.

Before taking RAVICTI, tell your doctor about all of your medical conditions, including if you:

• have liver or kidney problems.
• have pancreas or bowel (intestine) problems.
• are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. If you become pregnant during treatment with RAVICTI, call Horizon at 1‐866‐479‐6742 to report the pregnancy.
• are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

What are possible side effects of RAVICTI?

RAVICTI may cause serious side effects, including:

• See “What is the most important information I should know about RAVICTI?”

The most common side effects of RAVICTI in adults include:

• diarrhea
• gas
• headache
• abdomen (stomach) pain
• vomiting
• tiredness
• decreased appetite
• indigestion or heartburn

The most common side effects of RAVICTI in children 2 years to 17 years of age include:

• upper abdomen (stomach) pain
• rash
• nausea
• vomiting
• diarrhea
• decreased appetite
• headache

The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:

• low white blood cell count (neutropenia)
• vomiting
• constipation
• diarrhea
• fever
• reduced food intake
• cough
• stuffy nose
• runny nose
• skin rash
• small round bumps on the skin

The most common side effects of RAVICTI in children less than 2 months of age include:

• vomiting
• rash
• gastroesophageal reflux
• increased levels of liver enzymes in the blood
• decreased appetite and reduced food intake
• low red blood cell count (anemia)
• cough
• loss of too much body fluid (dehydration)
• too much acid in the blood (acidosis)
• high blood platelet count (thrombocytosis)
• low blood platelet count (thrombocytopenia)
• low blood neutrophil count (type of white blood cell) (neutropenia)
• high white blood cell count (lymphocytosis)
• diarrhea
• gas
• constipation
• fever
• drowsiness (lethargy)
• irritability
• agitation

These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional Important Safety Information, please review theMedication Guideat RAVICTI.com and discuss with your doctor.

Today, we will be talking about science-based ways you can take charge of your health...

Specifically, how you can better understand and use the information you received to improve your health and well-being.

These helpful tools will help you better understand what your healthcare team is telling and asking you, help you ask the important questions to get the answers you need, and discover tips for speaking confidently with your healthcare team so you feel better about your interactions with them.

Why is this important?

Well, have you ever been confused by a medical term?

Have you ever been in a situation in which you thought you understood something your doctor explained, but then later realized you didn't understand it?

Understanding and using information, particularly health information, can be difficult.

In the most basic way of looking at it, communication is challenging. In our everyday lives, we often think "communication" occurs just by talking but sometimes people don't hear us, understand us, or even know what we mean.

There is often an illusion that you communicated clearly. Doctors and other people who are part of your care team are no different!

This can be especially true in a medical setting where doctors and other members of your healthcare team have limited time. They are doing their best to share important information, but sometimes they are rushed, use words that don’t make sense, or are too technical.

Sometimes we think we get it, but then we forget by the time we get home or remember it incorrectly. A.R.T. is a helpful way to remember three science-based ways to understand and act on the information your doctor gives you.

We will start with the “A” in A.R.T.—ASK.

Being curious can help you become a healthier patient.

Asking questions is key to good communication with your doctor. If you don't ask questions, they may assume you already know the answer or that you don't want more information.

Don't wait for the doctor to raise a specific question or subject; they may not know it's important to you.

Sometimes, it can be confusing to think of the right time to ask questions. But, the best time is ALL the time.

“Ask Me 3” is a new patient education program designed to help communication between healthcare teams and patients

Ask Me 3 encourages you to understand the answers to 3 questions:

• What is my main problem?
• What do I need to do? And...
• Why is it important for me to do this?

Feel free to ask these three simple but important questions whenever you meet with your doctors, nurses, and their staff.

Now, a great question is... “What if I ask, but still don’t understand? Let your healthcare team know if you still don’t understand what you need.

You might say, “This is new to me. Will you please explain that to me one more time?” Don’t feel rushed or embarrassed if you don’t understand something. Ask your healthcare provider again.

Repeating is an opportunity for you to give your own understanding of what the healthcare team has explained to you or shown you. This could be applied to many things:

• a pharmacist telling you how to split a pill
• a physical therapist showing you how to wear a brace
• a doctor showing you how to monitor your blood sugar
• and other things that are told or shown to you that may be helpful to repeat

When repeating or showing back, there are a few things to remember: Use your own words rather than simply holding the doctor or nurse’s words in your memory and racing to say the exact same thing. Take a moment to think about it and then say it in the words that you would use if you were explaining it to a friend or family member.

Repeat back the actions and activities you are being asked to do. Show the steps your healthcare team went through and ask questions along the way if something doesn't make sense.

Think about the type of learner you are—if you like seeing things versus hearing things, that might make a difference in how you want the information shared with you.

Many of us hold back when we talk to our doctors or nurses; we think of our healthcare team as experts, which can make it harder to have a two-way conversation with them. Sometimes, we don’t know what information to share. You may feel pressured if your healthcare team seems rushed or if you feel they are not listening to you.

Let’s discuss the differences between passive, assertive/confident, and aggressive communication styles.

Passive people are often afraid to speak up, speak softly, give in to others, and usually fail to express their feelings or needs. A passive communication style might sound like “It really doesn’t matter that much” or “Okay, that’s fine.”

Aggressive people might disrespect the other person and deny them the chance to express their opinions. An aggressive communication style might sound like “I’m right, and you’re wrong.”

Assertive people express their wishes, questions, and needs in a clear and direct way so that other people—like your doctor—are able to understand what it is they want and need.

Assertiveness is not the same as aggression. Assertiveness is about self-respect and expressing your opinions, whereas aggression is about disrespecting the other person and denying them the chance to express their opinions.

Assertive communication involves eye contact that demonstrates interest, a speaking voice at a level tone and knowing how, when, where, and what you choose to say.

“I” statements offer a way for you to let your healthcare team know if you feel rushed, confused, or threatened. It is important for the healthcare team to know how you’re feeling.

The following are all examples of assertive “I” statement messages:

• “I need to ask some questions.”
• “I feel confused.”
• “I prepared for this appointment and want to show you some of the changes I’ve tracked.”

You can build on this using the formula of “I feel _____ when ____ because ____,” as a way of expressing how you feel, speaking up when you feel that way, and why you feel that way.

Here are two examples:

“I feel frustrated when I ask a question on the portal and don’t get a reply because I am not sure whether I am supposed to take my next dose.”

“I feel really happy when you take the time to answer my questions because I leave feeling clear on what I’m supposed to do.”

It’s okay for you to ask questions and tell your healthcare team what you want like... if you want your doctor or nurse to speak slower, clearer, louder, or to use plain language.

The important truth is... taking charge of your health is an A.R.T. It doesn’t have to be complicated. Just Ask, Repeat, Talk. Doing those three things will help you get more out of all your interactions with your healthcare team.

Change is hard.

You can all probably think of a change you've made in your life—or many changes—that took effort. Even just starting a change can be challenging.

There’s another part of the change process, though, that we don’t think about as much: How to maintain changes... how to stay consistent day after day. Maintaining change—sticking with it over time even when things get hard—is one of the real challenges of change.

Today the goal is to give you real-life strategies that are based on the newest science available, to help you make changes that stick.

Let’s explore a little bit about the process of change.

When we are thinking about change, it is normal for us to feel two ways about something – some good feelings, and some bad feelings.

Most people who need to make a change are unsure how to do it. We might want to look for a new job but also worry about leaving the one we currently have. We want to feel better with a new medicine but at the same time we don’t want to feel the hassles of taking it.

We see reasons to change and reasons not to. We want to change and we don’t want to change, all at the same time. We want two opposite things at the very same time. But it’s very normal to feel this way.

Despite the stickiness of this dilemma, we often decide to make a change, then we begin to do it, and then we take a step forward, followed by another step and another.

We can celebrate that we’ve made it over this initial uncertain hurdle, because that truly is a big win for us.

But this is often where things get even more tricky! Most changes require long-term attention and effort over time.

We will come to points in our life when we will have to decide if it is better to continue pursuing change or to accept what already is.

Here’s a non-trivial trivia question about change. Guess how many New Year’s resolutions are kept by February 1. Are you ready for this? Just 20% kept. 80% quit.

Today we will share with you five ways, based on the science of behavior change, to make change STICK. The word “STICK” is made up of letters to help you remember what is important to keep you on track and keep you motivated to succeed. We will now look at each of these strategies in more detail.

Let’s start with the ‘S’ in stick. First, imagine the change process as a road. Now, fast forward a few months or a year so that you are farther along that road. Now, suppose you turn around and look back on the change you’ve made, realizing that something got you off course. What would the obstacle or obstacles be? How might you avoid, escape, or overcome them? What can you do now, ahead of time, to develop a plan to deal with these obstacles and stay the course?

It’s a bit like having a fire escape plan. No one ever really expects a fire, but we all know it is a good idea to have an escape plan if there ever was one. You need to know where the exits are, and how to get to them.

The ‘T’ stands for ‘think of your why.’ Take a moment to think of your ‘why’—what really matters to you? What is most important in your life? How does this change connect with things that are most important to you?

By thinking of our why, we are reminding ourselves of the reasons we wanted to make this change and why we did it in the first place. We might also be reminding ourselves of what we have gained.

If we started a new exercise plan, we might think of the ways we’ve felt stronger lately and how that has made us feel about ourselves, such as: “I was able to carry those heavy grocery bags at one time. I felt strong,” or “I have been able to take a walk with my neighbor without stiffness or pain thanks to this medicine.”

Who is someone you might share your “why” with? Perhaps your doctor or a family member or friend? Sometimes simply saying things out loud, in the presence of someone you trust, can help us stay on track with changes.

The ‘I’ stands for ‘incorporating self-affirmations.’ Many times, we tend to look at what we are missing; what we have done wrong; how we have fallen short.

Self-affirmations are a way to change because they allow us to shift our perspective to what’s working—what strengths we have and what we can tap into when things become difficult.

Here are some words to describe strengths of successful changers. Take a look. Which ones do you think apply to you? In what ways are you like them? Where in your life have you particularly shown some of these qualities? What are some examples of how you show these positive qualities?

Everyone can find some words on this list that describe themselves.

The ‘C’ stands for ‘consider setbacks as learning experiences.’ With a setback, we imagine ourselves going back to square one. However, we actually start from a better place with helpful learnings gained from our last try—applying what was learned and making changes to correct what hadn’t worked before. You can ask yourself, “What positive lesson can I learn from this setback?”

This is because a setback can be a very good thing. It can be good because you now have more experience and more information that will help you move forward. And with more information, you are empowered. You learned what wasn’t working, and by incorporating what you learned, you will be better prepared for the next try.

Think about some of the setbacks you have faced as you attempted to stick with a change. When you were faced with a challenge, what lessons did you learn that will help you move forward?

The ‘K’ stands for ‘keeping your eye on progress rather than perfection.’ Changing a familiar behavior is usually not easy. Humans are not perfect, and if you happen to get off course, what matters is to get back on track, not allowing a mistake to become a disaster.

For example, imagine you set a goal for yourself such as “not eating sweets,” but then you find yourself on the couch with a pint of ice cream. And after the first bite you exclaim, “I ruined it all. I might as well stop this whole plan of not eating sweets!”

What’s happened is known as “the first rule violation”—something happens. And when it does, it can trigger a breakdown in self-control. Once the rule has been broken, it seems there is nothing to lose.

We tend to have unhelpful negative thoughts like, “You blew it,” “You just can’t do it,” “What’s the point in trying?”

Repeating statements like this to ourselves is not helpful. Feeling bad doesn’t make things any better.

Instead, we can think of some “comeback” replies to keep our eye on progress.

Rather than the all-or-nothing view, you can view it from the perspective of progress. A way of thinking about what positive steps have been made. Perhaps you put the spoon away and the ice cream back in the refrigerator and then say, “Now wait a minute…in the past I would have just eaten this whole thing….today I stopped myself,” or “What can I do to get back on track?”

So... these are the steps in STICK:

• Stay the course
• Think of your why
• Incorporate self-affirmations
• Consider setbacks and learning experiences
• Keep your eye on progress not perfection

And that is what you need to know when Making Changes Stick!

Goal setting is part of what we do every day. We set goals for our days, our careers, our health, and our lives in general. This session will help you learn ways to achieve the goals that matter to you.

Imagine throwing a dart without a target. Where would you aim? Attempting to make a change in our lives without a clear goal is like throwing a dart without a target. It’s very difficult to stay motivated on change unless a goal is focusing our efforts.

By setting a goal, we give ourselves a target to shoot for... and a reason to keep going.

Like so many things in life, there are skills we can learn to increase the chances of achieving our goals.

You can actually use the letters in the word GOALS to help you remember them. We will now look at each of these skills in detail.

‘G’ Stands for Grit.

Now and then, we all face challenges that make us feel limited on what we can achieve.

We may take a few steps and then change direction because it seems impossible. Yet to accomplish goals, especially long-term goals, we must stick with it even when things are hard.

Grit means having the courage to put one foot in front of the other. To fall nine times but get up 10 times! People who have grit practice more than others. However, they don’t just do the same thing over and over again. Instead, they practice the areas they’re weak in. This can often be painful and hard. After all, doing something that you’re not good at can be tiring.

You can build grit by adopting a habit of daily practice, learning as you go and, and most importantly, moving through the challenging parts.

Sometimes it can even help to say out loud, “This is so frustrating because I’m challenging myself.”

‘O’ Stands for Outcome.

What is the specific outcome you want? This is more than the goal itself. IT’S WHAT YOU HOPE THAT GOAL GETS YOU. For example, a goal to take your medication everyday as prescribed could result in an outcome of having more freedom and less symptoms that get in the way.

A common mistake when setting a goal is to only think about how great life will be after accomplishing it without considering what is currently holding us back.

A helpful skill is to think of the outcome you want and create a plan that will get you through any challenges that stand in your way.

‘A’ Stands for Achievable.

Think about the skills or abilities that are needed to achieve your goal. How can you make it practical and within reach? For example, reading one book per month is probably achievable. Becoming a professional NBA player may not be... because you may not have the ability or skill to achieve that goal. You could set a goal to practice basketball one hour per day, though!

You could set a goal to practice basketball one hour per day, though!

How will you know your plan is working? What are the things you (or others) could see that will let you know you are closer to achieving your goal?

Think of the way your smartphone tracks your steps and how you can compare the steps you took today to yesterday’s. You can compare week to week, or even month to month. Is it something within your control? Is it realistic? What is the time frame you are wanting to achieve this goal in?

Rather than just thinking “I want to be healthy,” think of how you can frame it in a way that is time bound and within your control. For example, “Starting on Monday, after work, I will begin exercising 20 minutes a day, three times per week.”

A specific question you can ask to determine if your goals are achievable is to fill in the blank: I will know my plan is working if “blank.” What are the specific indicators that show you, and others ,that you are closer to reaching your goal?

‘L’ Stands for Link.

Think again about the goal you want to achieve. Now think of something you really like to do that you could bundle with that goal. Perhaps it’s scrolling through social media posts, playing a game on your phone, or watching Netflix. Linking steps toward your goal with something you like is a way of doing what you want to do AND what you should be doing to achieve a specific goal.

The trick is that you must do the two things together. One shouldn’t happen without the other. Unlike doing something fun as a reward AFTER completing a task you’re not so fond of, this behavioral practice ties together something you like with completing necessary tasks.

So how does it work? If your goal is to spend an hour a day organizing and doing household chores so your weekends can be more relaxing.

You might bundle a not so fun task like laundry with watching your favorite Netflix show. Or maybe you’re trying to finish a paper and you decide to bundle this not so fun task with...a fancy coffee drink.

But there’s one important catch. In order to stick to the plan and make this work, you have to have some self-control. If you reward yourself without doing what you should be doing, such as watching Netflix without doing laundry, the system will begin to fall apart.

‘S’ Stands for Steps.

Larger goals can be broken down into smaller goals. Small steps together equal a giant leap. The trick is to break goals down into the smallest, most manageable steps you can.

Think about someone who wants to go on a long run but is out of shape. While it may be tempting to want to start on the run and simply see how far you can go, it can be more helpful to start small and track your progress.

Perhaps start by getting running shoes. Another step may be running around the block after dinner. Then you might build up to running around the block two times the next day and three times the next. This allows you to check off each goal along the way, which can keep you motivated. You can also reflect on where you’ve been by documenting your progress and sharing with friends or family.

So, to recap, here are the easy-to-remember skills in G.O.A.L.S.:

• Grit
• Outcome
• Achievable
• Link, and
• Steps

And using them is how to achieve the goals that matter to you.

Hoy hablaremos de cómo puede cuidar de otras personas y, al mismo tiempo, cuidar de sí mismo. Veremos de qué se trata esto.

Piense en una ocasión en la que un amigo pasó por un momento difícil. ¿Cómo respondió usted ante esa situación? Ahora piense en una ocasión en la que USTED pasó por un momento difícil. ¿Cómo respondió en esa situación... para consigo mismo? Probablemente haya respondido distinto. Solemos tener mucha más compasión con nuestros amigos y ser más severos con nosotros mismos. ¿Cómo podemos tratarnos con esa misma gentileza y cariño?

En nuestro rol de cuidadores, cuando ponemos a otras personas en primer lugar, nos olvidamos de cuidar de nosotros mismos. La manera de ser un cuidador resiliente es practicando la autocompasión... tratarse a uno mismo de la misma forma que trataría a un amigo.

Ahora, lo que nos impide practicarla autocompasión son las severascríticas que nos dan vueltas por lamente. Pensamos en frasescomo...“Nunca serás capaz de hacer esto”o “Siempre lo arruinas”.

Mediante la autocompasión,reemplazas las críticas mentalespor pensamientos que un amigoutilizaría para consolarlo a usted.Por ejemplo:
“Veo que estás haciendo lo mejorposible”.
“Las personas que cuidas están enbuenas manos contigo”.
O... “Eres una persona fuerte porenfrentarte a esto durante tantotiempo”.

Otra forma de practicar laautocompasión es mediante laescritura. No tiene que ser algoformal. Incluso puede escribir en suteléfono.

Sin importar cómo lo haga, utilice lastres partes de la autocompasiónpara procesar lo que estáexperimentando como cuidador.

1) Bondad con usted mismoEscriba palabras bondadosas ycomprensivas de consuelo:“Está bien. Cometiste un error, perono es el fin del mundo”.

2) Humanidad comúnEscriba cómo sus sentimientos seconectan con la experienciahumana en general:“Todos cometemos errores. Deesta forma aprendemos”.

3) Conciencia plenaEscriba cómo se siente (sientevergüenza, tristeza, pena o miedo)sin juzgarse:"Me enojé, exageré y luego sentívergüenza”.

Si cambia el tono de su voz internay escribe con frecuencia, laautocompasión lo hará másresiliente y podrá recuperarse delos desafíos de la vida.

Y eso es importante. Porque laoportunidad de ser un cuidadorpuede ser una de las actividadesmás gratificantes que haga.

Pero... para SEGUIR haciéndolo,es importante tener la intención decuidar de uno mismo en el proceso.

Muchas gracias.

English: Today, we will be talking about ways you can take charge of your health…

SPANISH: Hoy vamos a hablar cómo puede hacerse cargo y tomar control de su salud.

English: Specifically, three skills to help you better understand information you get from your doctor. These are three simple skills or tips you can use at your next doctor's appointment.

SPANISH: Específicamente, hay tres maneras de entender mejor la información que reciba de su médico y usar estos tres pasos para tomar control de su salud. Son tres simples destrezas o trucos que puede usar en su próxima cita médica.

English: Ask, Repeat, Talk, are three skills to help you understand and act on the information your doctor gives you. Ask about the information you receive to make sure you understand. Repeat what you hear to make sure you know what to do. Talk with confidence and be specific so the doctor knows how you are doing and your needs.

SPANISH: Preguntar sobre la información que reciba para asegurase que entiende. Repetir lo que escuchó para asegurarse que sabe lo que tiene que hacer. Hablar con confianza, y ser específico para que el doctor sepa como está y qué es lo que necesita.

English: We will start with ‘ASK’. Learn to be curious. Ask questions. Asking questions is important to have good communication with your doctor. If you don't ask questions, they may think that you know the answer or that you don't want more information. Curiosity, wanting to know more, can help you better understand the information you receive. And asking, can help you collaborate, be a partner with your doctor; to work more actively with your doctor on how to take care of your health. If you have any doubts...... Ask, don't wait to be asked. Take charge of your health! Well, and what can I ask?

SPANISH: Comenzaremos con 'PREGUNTAR'. Aprenda a ser curioso. Haga preguntas. El preguntar es importante para tener una buena comunicación con su médico. Si no hace preguntas, ellos puedan pensar que usted sabe la contestación o que usted no quiere más información. La curiosidad, el querer saber más, le puede ayudar a mejor entender la información que recibe. Y el preguntar, le puede ayudar a colaborar con su médico; a trabajar más activamente con su doctor en cómo cuidar su salud. Si tiene alguna duda… Pregunte, no espere a que le pregunten. ¡Tome riendas en su salud! Bueno, ¿Y qué puedo preguntar?

English: There are three important questions that you should always remember to ask at any medical appointment: What do I have? What is my problem? What do I need to do?… and Why is it important for me to do this? If you have any doubts, or do not understand something, remember you can ask anything.

SPANISH: Hay tres preguntas importantes que siempre debe recordar hacer en cualquier cita médica: ¿Qué es lo que tengo? ¿Cuál es mi problema de salud? ¿Qué tengo que hacer?… y ¿Porqué es importante que haga lo que me dice? Si tiene alguna duda, o no entiende algo, recuerde que usted puede preguntar cualquier cosa.

English: Now, a great question is... “What if I ask, but still don’t understand? Then, tell your doctor.

SPANISH: Ahora, la gran pregunta…

¿Qué pasa si yo hago una pregunta y todavía no entiendo? Entonces, déjele saber a su doctor que todavía no entiende.

English: Let your healthcare team know if you still don’t understand what you need. You might say, “This is new to me. Will you please explain that to me one more time?” Don’t feel rushed or embarrassed if you don’t understand something. Ask your healthcare provider again. Studies show that people who understand their doctor's instructions and recommendations better make fewer mistakes when taking their medicines or preparing for a medical exam or procedure. So, do not stop asking! That's the first skill. Let's talk about the second one.

SPANISH: Si no entiende, hágaselo saber a su médico o a su equipo de salud Podría decir: "Esto es nuevo para mí. Por favor, explícamelo una vez más. ” o “¿Podría repetir la información? No se sienta apurado o avergonzado si no entiende algo. Pregunte de nuevo. Estudios demuestran que las personas que entienden mejor las instrucciones y recomendaciones de su médico, cometen menos errores al tomarse sus medicinas o al prepararse para algún examen o procedimiento médico. Así que ¡No deje de PREGUNTAR! Esa es la primera destreza. Veamos cuál es la segunda.

English: To take control of your health, the second skill we must remember is to REPEAT. Repeating is an opportunity for you to give your own understanding of what the healthcare team has explained to you or shown you. This idea could be applied to many things: a pharmacist telling you how to split a pill, a physical therapist showing you how to wear a brace, a doctor showing you how to monitor your blood sugar and other things that are told or shown to you that may be helpful to repeat.

SPANISH: Para tomar control de su salud, la segunda destreza que debemos recordar es REPETIR. Repetir es una oportunidad para ver si ha entendido lo que su médico le explicó. Porque al repetir tiene la oportunidad de explicarle a su doctor, en sus propias palabras, lo que ha entendido. Esta idea se puede aplicar a muchas cosas, por ejemplo: Cuando el farmacéutico le dice cómo partir una píldora o tableta en dos; cómo dividirla. Cuando el terapista físico, o fisioterapeuta, le enseña cómo ponerse o cómo usar un aparato ortopédico. Cuando el doctor le explica cómo medir y controlar su nivel de azúcar en la sangre. En fin, repetir es una destreza muy útil. Le ayuda a ver si ha entendido cualquier tipo de información que le expliquen, o que le enseñen.

English: When you repeat the information remember this tip: Use your own words rather than simply holding the doctor or nurse’s words in your memory and racing to say the exact same thing. Take a moment to think about it and then say it in the words that you would use if you were explaining it to a friend or family member. Now let's look at the third skill.

SPANISH: Cuando repita la información recuerde este detalle: Use sus propias palabras. No se apresure, ni trate de recordar o usar las mismas palabras del doctor o la enfermera. Tome un momento para pensarlo y luego, repita la información como si le estuviera explicando a un amigo o a un familiar. Ahora veamos la tercera destreza.

English: Let’s look at using the third skill – TALK. Many of us hold back when we talk to our doctors or nurses; we dare not speak. Sometimes, we don’t know what information to share. You may feel pressured if your healthcare team seems rushed or if you feel they are not listening to you. Use simple words to express yourself and get your message across. Don't be afraid to express yourself, to say what you feel or are worried about. Express yourself and share information that will help your healthcare team guide your care and help you work better with them. Expressing yourself will help you to be heard, and make sure your needs are met. Expressing yourself , sharing, will also help you remember information, and give you more control over your health. Let's see how we can express ourselves.

SPANISH: Hablemos de la tercera destreza – Conversar. A muchos de nosotros nos sucede que cuando hablamos con nuestro médico, nos contenemos, nos restringimos; no nos atrevemos hablar. A veces, no sabemos qué información compartir. Tal vez nos sentimos apresurados, pensamos que el doctor está ocupado y no tiene tiempo de escucharnos. Use palabras simples para expresarse y transmitir su mensaje. No tenga miedo de expresarse, de decir lo que siente o le preocupa. Compartir información, le ayudará a que pueda relacionarse mejor, a trabajar mejor, con su médico o equipo de salud. Expresarse le ayudará a que le escuchen … y que se satisfagan o se resuelvan sus necesidades médicas. Y también, el compartir, el expresarse, le ayudará a poder recordar información más fácilmente. Sobretodo, podrá lograr un mejor control sobre su salud. Veamos cómo podemos expresarnos.

English: When sharing information with your doctor or healthcare team , it is useful to use “I” statements. “I” statements offer a way for you to let your doctor or healthcare team know if you feel rushed, confused, or threatened. Remember that it is important for your doctor to know how you’re feeling. The following are all examples of assertive “I” statement messages: “I need to ask some questions.” “I feel confused.” “I prepared for this appointment and want to show you some of the changes I’ve tracked.”

SPANISH: Al compartir información con su médico, es muy útil usar las afirmaciones o expresiones que comienzan con la palabra “yo”. Usando "yo" es una buena manera de decirle a su médico si se siente apurada, o confundida. Recuerde que es importante que su médico sepa cómo se siente. Aquí tenemos varios ejemplos de expresiones usando "Yo". “Yo necesito hacerle unas preguntas.” “Yo me siento confundida.” “Yo me preparé para esta cita/para esta consulta y aquí le muestro algunos de los cambios que he observado.”

English: In summary: Asking, Repeating, and Talking are three skills that will help you take control over your health. To help you understand and act on the information you receive from your doctor, remember these three steps: Ask about the information you receive to make sure you understand. Repeat what you hear or receive, to make sure you know what to do. And Talk – speak with confidence, express what you are feeling and be specific so that the doctor understands how you are doing and what are your needs. We hope this information will help you in any doctor’s appointment and help in taking charge of your health.

SPANISH: En resumen: Preguntar, Repetir, y Conversar son las tres destrezas que le ayudarán a tomar el control sobre su salud. Para entender y poner en práctica la información que reciba de su médico, recuerde los tres pasos: Preguntar sobre la información que reciba para asegurase que entiende. Repetir lo que oye o recibe, para asegurarse que sabe lo que tiene que hacer. Y Conversar - hablar con confianza, expresar lo que siente y ser específico para que el doctor sepa cómo está y qué es lo que necesita. Esperamos que esto le ayude en cualquier cita médica y así logre un mejor control sobre su salud.

English: Thank you!

SPANISH: ¡Gracias!

English: Improving Communication with Your Doctor

Spanish: Cómo mejorar la comunicación con su médico

English: Today we’ll talk about different communication styles and how to improve communication with your doctor or healthcare team.

Spanish: Hoy hablaremos sobre diferentes estilos de comunicación y cómo mejorar la comunicación con su médico o su equipo de profesionales de salud.

English: There are several communication styles. Let’s discuss the differences between passive, assertive/confident, and aggressive communication styles.

Spanish: Hay varios estilos de comunicación. Comparemos las diferencias entre comunicación pasiva, comunicación asertiva o llena de confianza, y estilos de comunicación agresivos.

English: Passive people are often afraid to speak up, speak softly, give in to others, and usually fail to express their feelings or needs. A passive communication style might sound like… “It really doesn’t matter that much” or “Okay, that’s fine.”

Spanish: En comunicación pasiva, las personas a menudo tienen miedo de hablar, hablan en voz baja, tienden a ceder a lo que dicen los demás, y por lo general no expresan sus sentimientos o necesidades. Un estilo de comunicación pasivo puede sonar como… "Realmente no tiene importancia", "OK, está bien”, "No pasa nada."

English: Assertive people express their wishes, questions, and needs in a clear and direct way so that other people — like your doctor are able to understand what it is they want and need.

Spanish: Las personas asertivas suelen expresar sus deseos, hacer preguntas, y expresar sus necesidades de forma clara y directa para que otras personas — como su médico, entiendan qué es lo que quieren y necesitan.

English: Aggressive people might disrespect the other person and deny them the chance to express their opinions. An aggressive communication style might sound like… “I’m right, and you’re wrong.”

Spanish: Las personas que se comunican de forma agresiva, podrían faltarle el respeto a la otra persona y les niegan la oportunidad de expresar sus opiniones. Un estilo de comunicación agresivo podría sonar cómo "Yo tengo razón, y tú estás equivocado.”

English: Assertiveness is not the same as aggression. Assertiveness is about self-respect and expressing your opinions, whereas aggression is about disrespecting the other person and denying them the chance to express their opinions. Assertive communication involves eye contact that demonstrates interest, a speaking voice at a level tone and knowing how, when, where, and what you choose to say.

Spanish: La asertividad no es lo mismo que la agresión. La asertividad se trata de respetarse a sí mismo y expresar tus opiniones, mientras que la agresión le falta el respeto a la otra persona y le niega la oportunidad de expresar sus opiniones. La comunicación asertiva implica el contacto visual, que demuestra interés por el otro, hablar en un tono de voz nivelado y el saber cómo, cuándo, dónde y qué elige a decir.

English: “I” statements offer a way for you to let your healthcare team know if you feel rushed, confused, or threatened. It is important for the healthcare team to know how you’re feeling. Speak assertively, using the formula: “I feel _____ when I ___ _ because ____". “I” statements are part of being confident in our communication. They don’t assign blame.

Spanish: Las afirmaciones o expresiones usando "yo”, son maneras de comunicarle a su equipo médico si se siente apurado, confundido o amenazado. Es importante que su equipo médico sepa cómo se siente. Hable asertivamente, usando la fórmula de “Yo me siento _ _ _ _ _ cuando _ _ _ _ porque ____." Las expresiones usando " yo " ayudan a hablar con seguridad y tener confianza en cómo nos comunicamos….. Y no culpan a nadie. Yo me siento… Yo creo que… Pienso que… Me parece… Vamos a ver dos ejemplos.

English: The following are two examples of assertive communication using the formula: “I feel _____ when ___ _ because ____," as a way of expressing how you feel, and speaking up when you feel that way, and why you feel that way. Let's look at the first example: “I feel frustrated when I ask a question on the portal and don’t get a reply because I am not sure whether I am supposed to take my next dose.” Another example: “I feel really happy when you take the time to answer my questions because I leave feeling clear on what I’m supposed to do.” Remember, it's OKAY for you to ask questions and tell your medical team what you need, for example... if you want your doctor or nurse to talk to you slower, clearer, louder, or to use simpler language.

Spanish: Aquí vemos dos ejemplos de comunicación asertiva usando la fórmula: “Yo me siento _ _ _ _ _ cuando _ _ _ _ porque ____", como una forma de expresar cómo se siente, y poder decir cuando se siente de esa manera, y por qué se siente de esa manera. Veamos el primer ejemplo: "Me siento frustrada / frustrado cuando hago una pregunta en el portal y no me responden porque no estoy segura/ seguro si me debo tomar mi próxima dosis.” Otro ejemplo: “Yo me siento realmente feliz/ muy contenta cuando usted toma el tiempo para responder a mis preguntas porque me voy, sabiendo claramente lo que debo hacer.” Recuerde, está bien que haga preguntas y le diga a su equipo médico lo que necesita, por ejemplo... si desea que su médico o enfermera le hable más despacio, más claro, más alto o que use un lenguaje más simple.

English: Being honest and detailed builds trust and allows you to give specific information that is helpful in guiding your healthcare experience. This allows you to state specific ways you are feeling, instead of using general descriptions like “I’m okay” or “I’m fine.” For example... “One thing that is different…” “This is embarrassing to talk about, but…” “This began on this date…” “It felt like this…” And... “I’m uncertain about this…”/p>

Spanish: Ser honesto y detallado genera confianza y le permite dar información específica que puede ayudar en su atención médica. Sea más específico al decir cómo se siente, en lugar de usar descripciones generales como "Estoy bien" o "No pasa nada.” Por ejemplo... "Una cosa que es diferente..." "Me avergüenza hablar de esto, pero..." "Esto comenzó en esta fecha..." “Me sentía así..." y... "No estoy segura de esto..."

English: In Summary… To improve communication with your doctor, Be assertive, Speak with confidence, and be honest and specific. Your doctor and healthcare team appreciate honest and detailed communication. Remember, they are here to help you.

Spanish: En Resumen… Para mejorar la comunicación con su médico, Sea asertivo, Hable con confianza, Sea honesto y especifico. Su médico y profesionales de la salud aprecian una comunicación sincera y detallada. Recuerde, ellos están para ayudarle.

English: Thank you!

Spanish: ¡Gracias!

Amy: They always say it takes a village to raise a child. Raising a child with a rare disease, I always tell people in my case it takes a small army.

My name’s Amy, and I’m a UCD mentor.

I used to have hobbies. Now I have kids. We have 2 kids. Ah, TJ. And then there’s Mya. They are twins.

We first learned that Mya had a UCD when she was 6 months old. They always tell twin moms don’t compare your kids. But I had one, my son, who ate all the time and was healthy and happy, and I had my daughter, who was fussy all the time, and she would spit up, and I just knew something was wrong.

So I pushed the pediatrician and he did some tests. They told us, “It appears your daughter is in liver failure.” Then they determined it must have been a virus. They sent us home. In about a week, the doctors called me and said, “It’s possible it’s this really rare genetic disorder, this urea cycle disorder, so we’re gonna test her for that.” And we got the results about 3 days later.

So Mya has OTC deficiency.

And I was like, okay, at least now we know what she has. And now we can deal with it.

The doctors and nurses are amazing, but you know your child best. You can’t be afraid to tell ‘em that.

To be a mother of a child with a rare disease, you have to find your own voice. And you have to not be afraid to use it.

I always tell folks, you can’t give up. You absolutely cannot give up.

It’s gonna be hard. It’s gonna be exhausting, but you can do it. Your child can do it. And you’re not alone. You have resources. Don’t be afraid to reach out. And when people offer you help, take it.

I am a mentor.

I’m here for you.

Let’s talk.

USE and IMPORTANT SAFETY INFORMATION

What is the most important information I should know about RAVICTI?

RAVICTI may cause serious side effects, including:
Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI:

Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.

What is RAVICTI?

Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have wheezing, shortness of breath, cough, low blood pressure, flushing, nausea or a rash while taking RAVICTI.

Before taking RAVICTI, tell your doctor about all of your medical conditions, including if you:

These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional Important Safety Information, click here for the Medication Guide and discuss with your doctor.