Despite Hemophilia Joint Damage, New Treatment Opens Up Possibilities

Despite Hemophilia Joint Damage, New Treatment Opens Up Possibilities

Cazanadra Hemophilia

My mighty warrior Caeleb came home from school last week with a question. “Mom,” he asked, “my knee is really messed up, isn’t it?” I couldn’t see an injury, and so I asked him what he meant by “messed up.”

“I can’t run really fast like everyone else in gym class,” he said. “It’s from all of those bleeds I used to have, right?” I told him: “Yes, son, every time you had a bleed in your knee, it was being damaged.” He walked away, not happy or sad, but seemingly accepting of my response.

For the first time in the 12 years of his life, Caeleb is feeling great. He is not bleeding on a regular basis anymore; the new treatment with Hemlibra (emicizumab-kxwh) has changed his life. One shot per week. His shins are clean (no bruising) and you would never in a million years think by looking at him that he had a rare, genetic bleeding disorder — unless you noticed his limp when he walks.

He sports a swagger that many in the bleeding disorder community share; joints damaged from repeated bleeding cause the distinctive gait.

With this new, groundbreaking, life-changing treatment, kids like Caeleb will have more possibilities in their future. Some kids who play sports such as baseball, basketball, and soccer need to have extra infusions, especially if they have an inhibitor. These sports are not even possible for kids like Caeleb, but now that the landscape has changed, just one thing holds him back: joint damage.

Now that Caeleb feels like he can actively participate in sports at school, his leg is a reminder of the pain he has endured from recurring bleeds.

I want nothing more than for my outgoing, adventurous son to take part in the sports he could not participate in before. However, I will admit that when Chris Bombardier climbed Mount Everest, I thought, “That’s great, but Caeleb may never be able to do things like that.”

Even so, when he came home and realized his physical limits, it knocked the wind out of me. But what I have come to understand is that while Caeleb may never climb Mount Everest, people like Bombardier help our children to dream and realize that times are changing for the better regarding treatment. Even Everest may be a possibility someday.

My job is to help my mighty warrior figure some things out. I want to give him opportunities he has not had before. I want to see the excitement in his eyes when he is successful. More than anything, I want him to find his “Everest.” When he tackles it, I’ll be there cheering him on.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.

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Cazandra Campos-MacDonald is a motivational speaker, writer and patient advocate for families with bleeding disorders. She blogs about the journey of her two sons with severe hemophilia and inhibitors and has written articles and blog posts for numerous publications. Cazandra's older brother, Ronaldo Julian Campos, died of complications from hemophilia as an infant. She lives with her family, Rev. Joe MacDonald, Julian (21) and Caeleb (11) in Rio Rancho, New Mexico. You may follow her blogs and view her TEDxABQ talk at www.cazandramacdonald.com.

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