Aly’s story

ALY: Hi, my name is Aly, and I have X-linked hypophosphatemia. XLH runs in my family. My father passed it along to myself and my sister.

I’m just so thankful that I had great parents that built me up and gave me a fierce spirit because I felt like even though what I had was not normal and it was incredibly rare, I just took it on as a positive as much and as best as I could.

So the first time I ever learned about CRYSVITA, it was my doctor at the time who is the very first actual, true-blue XLH specialist that I’ve ever had.

So, CRYSVITA helped me find my new normal in the best way possible. I have seen such a difference with CRYSVITA.

My phosphorus levels have improved significantly since being on CRYSVITA.

I can’t even remember the last time I fractured a toe. And I mean, my toes were always fractured because I was always trying to walk around or do something.

Joint stiffness in the mornings especially has reduced significantly.

That’s what you call a difference, and that’s exactly what CRYSVITA made for me, was that difference.

It’s just this lovely surprise of being able to make it to ladies night, or that Zoom call or just being able to walk my dog.

The stiffness in my joints, the abnormal lab results of my phosphorus levels. I mean, these were things that my mom was constantly talking about to me and then my sister. So growing up, we talked about it almost every day. It was a daily part of our life. But it wasn’t the only thing we revolved our worlds around. But there was just so much to be learned and so much that hadn’t been discovered about my disease.

I never met a single doctor in my entire life that was a true XLH specialist, and then I met a doctor in Houston, Texas, and she forever changed my life.

It was the first time in my life that I had ever learned anything from another doctor about my disease...about my disorder, about XLH, about rickets, about the whole journey with just, an evolution of calling it X-linked hypophosphatemia and why that’s important.

Every moment was inspiring to me because I just felt like this is what I have been fighting for my entire life, and she is sitting right here in front of me.

We may be completely unique individually, but together we have so many similarities, and I feel that strength and that power within the XLH community when we are gathered together like that. It’s just like an energy and an experience like none other.

Seek out and find your network of people, and I think a great start would absolutely, 100%, be the XLH Network. That’s not a description. That’s an actual network of people. Look them up. They are wonderful.

My advice is to never give up. To be confident in your own advocacy. Be confident in your knowledge. And if you don’t have the knowledge, find it, attain it, research it, network it, social media it. Whatever you need to do to get the facts and the help that you need, the emotional support and just the friendships that are required to be there with you side by side.

Here I am, a part of the odds, yes, but also beating the odds.

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.
• High levels of calcium in the blood have been reported in patients taking CRYSVITA. The risk is greater in patients with pre-existing hyperparathyroidism (overactive parathyroid glands), for those who are unable to move for extended periods of time, become dehydrated, have high vitamin D levels, or have kidney issues. If you are at greater risk, your doctor will monitor your blood calcium and parathyroid hormone levels before you start and while taking CRYSVITA. If you develop high levels of blood calcium, your doctor may need to stop your treatment until it is adequately managed.
• 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 for CRYSVITA.