Staying active and staying connected

Robert, age 55,
living with XLH

With CRYSVITA, I’m headed on
a defined path that’s opened up
what I can do.

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. I haven’t used my cane in probably 3 years. 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. I also started bowling a few years ago for the first time in my life. Now I’m on a bowling league and work part-time at the bowling alley.”

Diagnosis of rickets 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.”

I couldn’t do some of the normal father/son stuff with my boys, like playing catch.

Starting CRYSVITA® (burosumab-twza)

“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.”

Some common side effects of CRYSVITA include headache, injection site and hypersensitivity reactions, restless legs syndrome, and dizziness. Other common side effects are covered in the Important Safety Information on this page.

Robert and his mother

It definitely helps to be more active. I’m now bowling, which I never did before, and feel better mentally and physically.

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.”

Try to keep positive. If you’re feeling down, talk to
somebody who understands what you’re going through.