"Our daughter Molly was diagnosed at 3 ½ years old. She has grown into a beautiful and happy young woman. While we work as a family on her treatment, she is proud of her ability to manage her RAVICTI® (glycerol phenylbutyrate) on her own."
Expertise: My true expertise is actually more along the lines of: school (working with staff to appropriately support students and IEP and 504 development) and advocacy and accommodations.
"My son Isaac was diagnosed when he was 8 years old. Soon after, we found out that my wife was a symptomatic UCD carrier as well. Over the last 13 years, we’ve tried a number of treatments, but RAVICTI® (glycerol phenylbutyrate) has made a difference for them."
Expertise: Marital issues, managing a career
"I was diagnosed with a UCD when I was 8 years old. I tried a couple of different medications before I found RAVICTI® (glycerol phenylbutyrate). Today I’m in college and studying to become a video game designer."
Expertise: School (IEP, homebound tutor, homeschool, college and college accommodations/office of disabilities)
"My daughter Laila was diagnosed at infancy. Until she was 9 years old, taking her medicine was inconvenient. RAVICTI® (glycerol phenylbutyrate) made a difference."
Expertise: Uncertainty at diagnosis, hospital visits, RAVICTI, managing a career
"I was diagnosed at 2 years old. Now I’m in my early 30s and working toward becoming a registered nurse. With RAVICTI® (glycerol phenylbutyrate), I can manage my ammonia levels."
Expertise: Exercise/diet, ammonia control
Patricia Patient and Caregiver
"When my son Isaac was diagnosed at 8 years old in 2004, I discovered that I am a symptomatic carrier of a urea cycle disorder too. Taking RAVICTI® (glycerol phenylbutyrate) finally made it possible for Isaac and me to have a life while controlling our ammonia levels."
Expertise: Uncertainty at diagnosis, school (former K-5 grade teacher and 3-12 grade homeschooler), ammonia control, insurance, marital issues, healthcare team, hospital visits, RAVICTI, support services (advocacy groups, Horizon support), and managing a career
"We’ve come a long way since our daughter Molly’s diagnosis at age 3 ½ years. Today, Molly is able to easily manage her RAVICTI® (glycerol phenylbutyrate) regimen."
Expertise: While invested in ways to best support my entire family, I also believe it’s really important to make sure that the primary caregiver is being supported.