Hear from people
taking CRYSVITA
Listen to stories from people with XLH who take CRYSVITA. Learn about their experiences and conversations with their family members about their journey.
- Kelly and Amanda: Talking to family about CRYSVITA
- Jennifer's story: The turning point
- Aly’s story: Finding a new normal
- Karen’s story: Healing and staying positive
- Bella’s story: Discover her journey
- Leah’s story: Balance life and high school
- Robert’s story: Believe in staying active and staying connected
Hear Kelly and Amanda discuss why it can be meaningful to talk with family members about their experiences with CRYSVITA, and how it is working for them.
Listen to Jennifer talk about why starting treatment for XLH was important for her and how her journey with CRYSVITA has helped in treating her XLH.
Get an inside look at Aly's personal story about life with XLH—from her early childhood to starting CRYSVITA (burosumab-twza), and how it has made an impact on her daily life.
Watch Karen describe her experience with XLH as a young adult in college, the importance of finding an XLH community, and her journey with CRYSVITA.
Bella’s story
Pursuing a career in pediatric medicine
Bella, real CRYSVITA patient
Diagnosed with XLH at age 2
“I was diagnosed with XLH by a team of doctors when I was 24 months old. I have one 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 premed 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.”
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.”
Bella and Leah,
real
CRYSVITA patients
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 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.
Leah’s story
Following her passions and staying optimistic
Leah, real CRYSVITA patient
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, real CRYSVITA patient
Leah’s experience with CRYSVITA
“I've been on CRYSVITA for about 3 years now, and I feel it's working for me.”
The most common side effects of CRYSVITA in pediatric XLH patients 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.
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.”
Robert’s story
Staying active and staying connected
Robert, real CRYSVITA patient
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.”
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, real CRYSVITA patient
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.”
Stay informed
Learn more about CRYSVITA, connect with a support community, and receive invites to important educational events.
