Physical activity is important, but it’s not always possible with hemophilia
A columnist worries about her son, who is physically limited due to chronic pain
When my boys were little, I dreamed about what their chosen activities might be — band, swimming, theater, or maybe soccer. I wanted to be a soccer mom, cheering on my sons from the sidelines and bringing orange slices for the team. My oldest son, Julian, did play soccer for a season, but my husband and I soon realized it was not his gift.
As much as I had hoped to have an athlete in the family, my dreams did not come true. I once tried to explain football to Julian, but he turned to me and said, “Mom, I just really don’t care.”
Instead, I’m stuck with a family of creatives, and it is beautiful. Music and art permeate my home. Julian is a talented singer and actor whose dream is to make a living performing. And my youngest, Caeleb, is only seen with a sketchbook.
It’s not necessarily bad that neither of my boys turned out to be sports kids. But when it comes to physical activity, I am very concerned about Caeleb.
Pain imposes limitations
Caeleb is 17 and has severe hemophilia A with an inhibitor. Years of repeated bleeding into his joints has resulted in hemophilic arthropathy, which causes him great pain. He’s been home for a month now with pain so intense that leaving the house is difficult. (Fortunately, his school has been wonderful about helping him stay on track via distance learning.) Some days are better than others, but overall, he is limited. I’m hoping he gets some relief from an upcoming ankle surgery.
While getting his ankle in shape is the top priority, I still worry about his overall physical health. Caeleb cannot walk 10,000 steps daily or go to the gym like his brother. A recent blood draw proved difficult, as his veins were hard to find. While Caeleb’s veins have always been difficult to access, his slight weight gain may be causing problems. Although he’s only put on a little, it concerns me.
Physical activity is good for the body and soul — even for those with bleeding disorders. After my boys were diagnosed with hemophilia, social workers and hemophilia treatment center staff told me that my sons weren’t so fragile that they couldn’t participate in physical activities. It was simply a matter of finding the best fit for each of them.
I want nothing more than for my kids to be healthy and feel good in their skin, and movement is an important part of that. But right now, I see Caeleb withdrawing a bit, and I worry he’s doing so because he feels like his future is limited.
A recent Hemophilia News Today article piqued my interest because it shares results of a study that examined physical activity in Norwegian teens and young adults with hemophilia A. While young hemophilia patients on regular, preventive treatment “are as physically active as their general population counterparts,” researchers wrote, many teens do not meet the World Health Organization’s recommended amount of weekly physical activity.
I encourage parents of children with bleeding disorders to talk with your medical providers about safe options for regular physical activity. It doesn’t have to be a team sport; it could be as simple as riding bikes with family. I miss those days, but I’m holding on to hope that Caeleb’s health will improve and family bike rides will be a regular activity for us once again.
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, and are intended to spark discussion about issues pertaining to hemophilia.
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