Diagnosed with rickets at around age 6 or 7
“The term XLH wasn’t very common back then, and there was a lot that wasn’t understood about the disease. One thing we did know is that XLH ran in my family. My grandmother had XLH; my mom and sister have XLH, too. It always affected me more than my sister. I had 7 broken legs growing up and about 15 surgeries. Nearly every 2 years, I had a broken bone or a cracked hip. Thankfully, neither of my sons has XLH, but it’s something we’ve openly talked about since they were young.”
“Try to keep positive. If you’re feeling down, talk to somebody who understands what you’re going through.”
Finding better days ahead
“I used to be afraid to go outside and do things and always depended on something to help me get around—a wall, a chair, a cane. For me, it helps to stay active. I grow peppers and tomatoes and love making my own salsa and spaghetti sauce. Occasionally, I try to get out fishing.”
Robert’s experience with CRYSVITA
“Since starting CRYSVITA, I haven’t had as much joint stiffness. My phosphorus is in the normal range or sometimes a little lower than normal. I receive CRYSVITA every 4 weeks, always right on the exact date, at the same time. It helps me stay on schedule having good communication with my doctor’s office.”
The most common side effects of CRYSVITA in adult XLH patients are back pain, headache, tooth infection, restless legs syndrome, decreased vitamin D levels, dizziness, constipation, muscle spasms, and phosphorus levels increased in the blood. Please see remaining Important Safety Information on this page.
Staying connected
“I belong to a couple XLH groups on social media, and I’ve attended XLH events. By staying connected, I’ve been able to meet people from all walks of life and exchange stories—I have friends all over the world now. There’s nothing like talking to people who personally understand what you’ve been through instead of just seeing it written in a doctor’s note.”
