There are many ways our team can connect you to the people and organizations who can help support you during your treatment experience.
“To be a mother of a child with a rare disease, you have to find your own voice.”
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:
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:
The most common side effects of RAVICTI in children 2 years to 17 years of age include:
The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:
The most common side effects of RAVICTI in children less than 2 months of age include:
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.
“I feel like there are people out there [who] need to have someone to rely on.”
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:
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:
The most common side effects of RAVICTI in children 2 years to 17 years of age include:
The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:
The most common side effects of RAVICTI in children less than 2 months of age include:
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.
“You can do this. There are many people like myself who are here, ready to help.”
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:
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:
The most common side effects of RAVICTI in children 2 years to 17 years of age include:
The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:
The most common side effects of RAVICTI in children less than 2 months of age include:
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.
“There’s no one who really understands unless they’ve done that and been there.”
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:
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:
The most common side effects of RAVICTI in children 2 years to 17 years of age include:
The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:
The most common side effects of RAVICTI in children less than 2 months of age include:
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.
“To be a mother of a child with a rare disease, you have to find your own voice.”
“I feel like there are people out there [who] need to have someone to rely on.”
“You can do this. There are many people like myself who are here, ready to help.”
“There’s no one who really understands unless they’ve done that and been there.”
Sometimes it helps to meet other people living with a UCD. Your Patient Access Liaison (PAL) can help you discover ways to connect with others, if interested (examples include in-person gatherings, online/virtual meetings, and even getting introduced to patient groups and mentors).
Connect with us:
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.
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:
RAVICTI may cause serious side effects, including:
The most common side effects of RAVICTI in adults include:
The most common side effects of RAVICTI in children 2 years to 17 years of age include:
The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:
The most common side effects of RAVICTI in children less than 2 months of age include:
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.
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.
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:
RAVICTI may cause serious side effects, including:
The most common side effects of RAVICTI in adults include:
The most common side effects of RAVICTI in children 2 years to 17 years of age include:
The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:
The most common side effects of RAVICTI in children less than 2 months of age include:
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.
