Diagnosed with XLH at age 2
“Early on, I was very bowlegged. My parents noticed it when I first started to walk. I remember we would be able to put a basketball between my legs when my feet were together. Even so, I’ve never had any surgeries to correct my legs. No one else in my family has XLH, but everyone is very supportive of me, including my 2 older twin brothers and my dad, Tom.”
What keeps Leah smiling
“I’m 16 and in 11th grade. I’ve discovered that I like math, so I can see myself going down the business math road at some point. I’m the manager of a field hockey team, which I enjoy, even though I physically can’t play anymore because of my knees. I also love swimming.”
“One of my biggest passions is definitely horseback riding. I practice jumping with my horse Citron. It’s such a good fit for me because it’s one of the only sports that doesn’t involve running; I can also connect with other kids and be part of a community. Riding is a breath of fresh air after a stressful day at school, where I feel overwhelmed with all my homework.”
Leah’s experience with CRYSVITA
“I've been on CRYSVITA for about 3 years now, and I feel it's working for me.”
Embracing an optimistic outlook
“My family and friends inspire me, especially my mom. She’s been so positive throughout my life. All of my experiences in the hospital while I was growing up really put things into perspective for us. From an early age, my mom taught me that rough spots in life could always be worse—that’s really stuck with me.”
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.
