Diagnosed with XLH at age 2
“I was diagnosed with XLH by a team of doctors when I was 24 months old. I have a younger sister who does not have XLH; we found out my case was spontaneous. I can’t imagine my life not having XLH. I’m more empathetic toward others, and I know that I want to go into pediatric medicine because of it.”
Finding her path forward
“Growing up, school was always a big part of my life. I’m very curious, and I love asking tons of questions in class. I’m really passionate about science in particular. I’m now a neuroscience major at Boston University and work as a research intern at a neurology clinic. Pushing through a pre-med curriculum isn’t fun at times, but I know it’s worth it. If I can spend the rest of my life doing the work that my doctors have done for me, that’s all I can ask for.”
“No one understands what it’s like to have XLH more than someone else with it.”
A friendship that defies odds
“I’ll never forget when Leah first came into my life. I was 7, and she was 2. At the time, her mom had no answers for what was causing Leah’s legs to bow. Her mom had heard about my diagnosis, so she connected with my mom, and they agreed to meet up since we lived so close. When they showed up to our house, my mom took one look at Leah and cried: ‘It’s Bella!’ She gave them my doctor’s information, and Leah was then formally diagnosed with XLH.”
“Leah and I have been bonded like family ever since. I’m so lucky that I have her; one of the most instrumental parts of managing my XLH has been relying on Leah and being there for her. Leah has made me grow up and learn what it means to set an example for someone. I know she looks up to me just because I’m older, but she’ll never understand how much I look up to her.”
“For the first time with CRYSVITA, my [phosphorus] levels look normal in comparison to how they’ve been my whole life.”
Bella’s experience with CRYSVITA
“I swam competitively growing up and was always pretty active, but when I began taking CRYSVITA at age 18, my joint stiffness started to go away. My phosphorus levels are consistent. For the first time with CRYSVITA, my [phosphorus] levels look normal in comparison to how they’ve been my whole life. While on CRYSVITA, I've experienced injection site reactions—a raised bump where I receive my injections that will go away after a day.”
The most common side effects of CRYSVITA in children with XLH are fever, injection site reaction, cough, vomiting, pain in arms and legs, headache, tooth abscess, and dental cavities. Please see remaining Important Safety Information on this page.
