Skip to main content

Hear from people taking
CRYSVITA

Aly’s story

Get an inside look at Aly’s personal story about life with XLH—from her early childhood to her experience finding her new normal with CRYSVITA as an adult.

play

Karen’s story

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.

play

Bella’s story

Pursuing a career in pediatric medicine

Bella, real CRYSVITA patient

XLH doesn’t define me, but it defines a lot of the best parts of me.

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.”

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.”

Bella and Leah,
real CRYSVITA patients

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 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

No one else in my family has XLH, but everyone is very supportive of me...

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.”

I love horseback riding because it lets me forget about everything else and just ride.

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

I’ve been on CRYSVITA for about 3 years now, and I feel it's working for me.

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

It always affected me more than my sister. I had 7 broken legs growing up and about 15 surgeries.

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, real CRYSVITA patient

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.

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.”

Discover more about CRYSVITA

CRYSVITA frequently asked questions

Get answers to your questions about CRYSVITA

Learn more about CRYSVITA support

See how the CRYSVITA support program may help you or your child

Learn how CRYSVITA works

See how CRYSVITA targets the underlying cause of XLH

Stay informed

Learn more about CRYSVITA, connect with a support community, and receive invites to important educational events.

Sign Up
What is CRYSVITA?

CRYSVITA is a prescription medicine used to treat adults and children 6 months of age and older with X-linked hypophosphatemia (XLH).

What is CRYSVITA?

CRYSVITA is a prescription medicine used to treat adults and children 6 months of age and older with X-linked hypophosphatemia (XLH).

Important Safety Information

You should not take CRYSVITA if:

  • You take an oral phosphate supplement and/or a specific form of vitamin D supplement (such as calcitriol, paricalcitol, doxercalciferol, calcifediol).
  • Your phosphorus levels from a blood sample are within or above the normal range for age.
  • You have kidney problems.

What is the most important information you should know about CRYSVITA?

  • Some patients developed allergic reactions (e.g., rash and hives) while taking CRYSVITA. Your doctor will monitor you for symptoms of an allergic reaction while you are taking CRYSVITA. Your treatment may need to be discontinued for serious allergic reactions.
  • High levels of phosphorus in the blood have been reported in some patients taking CRYSVITA. This may be related to a risk of high calcium levels in the kidneys. Your doctor will collect blood samples to monitor your levels. If you are already taking CRYSVITA, dose interruption and/or dose reduction may be required based on your serum phosphorus levels.
  • Administration of CRYSVITA may result in reactions at the injection site, such as hives, reddening of the skin, rash, swelling, bruising, pain, severe itching of the skin, and collection of blood outside of a blood vessel (i.e., hematoma). Call your doctor if you develop an injection site reaction. CRYSVITA may be discontinued if severe injection site reactions occur.

What are the possible side effects of CRYSVITA?

  • Adverse reactions that were seen in children with XLH are:

    • Fever
    • Injection site reaction
    • Cough
    • Vomiting
    • Pain in arms and legs
    • Headache
    • Tooth abscess
    • Dental cavities
    • Diarrhea
    • Decreased vitamin D levels
    • Toothache
    • Constipation
    • Muscle pain
    • Rash
    • Dizziness
    • Nausea

  • Adverse reactions that were seen in adults with XLH are:

    • Back pain
    • Headache
    • Tooth infection
    • Restless legs syndrome
    • Decreased vitamin D levels
    • Dizziness
    • Constipation
    • Muscle spasms
    • Phosphorus levels increased in the blood
  • Narrowing of the spaces within the spine is common in adults with XLH, and pressure on the spinal cord has been reported in adults taking CRYSVITA. It is not known if taking CRYSVITA worsens the narrowing of the spaces within the spine or the pressure on the spinal cord.

Before taking CRYSVITA, tell your doctor about all of your medications (including supplements) and medical conditions, including if you:

  • Are taking oral phosphate and/or active vitamin D (such as calcitriol, paricalcitol, doxercalciferol, calcifediol).
  • Are pregnant, think you may be pregnant, or plan to become pregnant. There is not enough experience to know if CRYSVITA may harm your unborn baby. Report pregnancies to the Kyowa Kirin, Inc. Adverse Event reporting line at 1-844-768-3544.
  • Are breastfeeding or plan to breastfeed. There is not enough experience to know if CRYSVITA passes into your breast milk. Talk with your doctor about the best way to feed your baby while you receive CRYSVITA.

While taking CRYSVITA, tell your doctor if you experience:

  • An allergic reaction such as rash or hives
  • A rash, swelling, bruising, or other reaction at the injection site
  • New or worsening restless legs syndrome

These are not all the possible side effects of CRYSVITA. Call your doctor for medical advice about side effects.

You may report side effects to the FDA at (800) FDA-1088 or www.fda.gov/medwatch. You may also report side effects to Kyowa Kirin, Inc. at 1-844-768-3544.

For important risk and use information, please see the full Prescribing Information.

What is CRYSVITA?

CRYSVITA is a prescription medicine used to treat adults and children 6 months of age and older with X-linked hypophosphatemia (XLH).

Important Safety Information

You should not take CRYSVITA if:

  • You take an oral phosphate supplement and/or a specific form of vitamin D supplement (such as calcitriol, paricalcitol, doxercalciferol, calcifediol).
  • Your phosphorus levels from a blood sample are within or above the normal range for age.
  • You have kidney problems.

What is the most important information you should know about CRYSVITA?

  • Some patients developed allergic reactions (e.g., rash and hives) while taking CRYSVITA. Your doctor will monitor you for symptoms of an allergic reaction while you are taking CRYSVITA. Your treatment may need to be discontinued for serious allergic reactions.
  • High levels of phosphorus in the blood have been reported in some patients taking CRYSVITA. This may be related to a risk of high calcium levels in the kidneys. Your doctor will collect blood samples to monitor your levels. If you are already taking CRYSVITA, dose interruption and/or dose reduction may be required based on your serum phosphorus levels.
  • Administration of CRYSVITA may result in reactions at the injection site, such as hives, reddening of the skin, rash, swelling, bruising, pain, severe itching of the skin, and collection of blood outside of a blood vessel (i.e., hematoma). Call your doctor if you develop an injection site reaction. CRYSVITA may be discontinued if severe injection site reactions occur.

What are the possible side effects of CRYSVITA?

  • Adverse reactions that were seen in children with XLH are:

    • Fever
    • Injection site reaction
    • Cough
    • Vomiting
    • Pain in arms and legs
    • Headache
    • Tooth abscess
    • Dental cavities
    • Diarrhea
    • Decreased vitamin D levels
    • Toothache
    • Constipation
    • Muscle pain
    • Rash
    • Dizziness
    • Nausea

  • Adverse reactions that were seen in adults with XLH are:

    • Back pain
    • Headache
    • Tooth infection
    • Restless legs syndrome
    • Decreased vitamin D levels
    • Dizziness
    • Constipation
    • Muscle spasms
    • Phosphorus levels increased in the blood
  • Narrowing of the spaces within the spine is common in adults with XLH, and pressure on the spinal cord has been reported in adults taking CRYSVITA. It is not known if taking CRYSVITA worsens the narrowing of the spaces within the spine or the pressure on the spinal cord.

Before taking CRYSVITA, tell your doctor about all of your medications (including supplements) and medical conditions, including if you:

  • Are taking oral phosphate and/or active vitamin D (such as calcitriol, paricalcitol, doxercalciferol, calcifediol).
  • Are pregnant, think you may be pregnant, or plan to become pregnant. There is not enough experience to know if CRYSVITA may harm your unborn baby. Report pregnancies to the Kyowa Kirin, Inc. Adverse Event reporting line at 1-844-768-3544.
  • Are breastfeeding or plan to breastfeed. There is not enough experience to know if CRYSVITA passes into your breast milk. Talk with your doctor about the best way to feed your baby while you receive CRYSVITA.

While taking CRYSVITA, tell your doctor if you experience:

  • An allergic reaction such as rash or hives
  • A rash, swelling, bruising, or other reaction at the injection site
  • New or worsening restless legs syndrome

These are not all the possible side effects of CRYSVITA. Call your doctor for medical advice about side effects.

You may report side effects to the FDA at (800) FDA-1088 or www.fda.gov/medwatch. You may also report side effects to Kyowa Kirin, Inc. at 1-844-768-3544.

For important risk and use information, please see the full Prescribing Information.