Hemophilia and hypermobility won’t keep me from dancing

I cannot tell you how many times I’ve heard the term “Bubble Wrap.” A child with hemophilia is born: “How am I going to keep this kid Bubble Wrapped and safe?” A kid with hemophilia falls on the playground and bleeds: “I wish we could Bubble Wrap you for school.” I bonk my elbow and cause a hematoma: “Did you lose your Bubble Wrap?”

I have mild hemophilia with what my doctors call a severe bleeding phenotype, meaning I bleed despite prophylaxis. Basically, I get breakthrough bleeds even when on medication to prevent them from happening. Yet I stay active. I take calculated risks and add safeguards to lower my bleeding risk.

One way I stay active is by dancing. It’s freeing to move my body to music, and I love a good challenge. It brings me so much pleasure to master choreography and commit the routines and combinations to memory.

I’ve tried many forms of dance over the years, including jazz and international folk, line and modern, square and lyrical. Can you guess my favorite? Of course, I’m drawn to a type of dance that can be hard on the ankles — a common target joint for bleeds in people with hemophilia. Tap!

There’s a lot of stomping, jumping, and general ankle movement in tap dancing. It’s part of what makes it so much fun. And seriously, how can one not love permission and encouragement to make lots of noise? I love hearing and matching the rhythms with each new dance composition. Tuesdays are my favorite day of the week because that’s when my adult tap class meets. I smile all the way there and back, and the joy continues throughout the day.

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The price I pay for dancing

Tapping comes at a price. My right ankle has been a problem joint off and on throughout my life. As a sprain once healed, I spent nine months in and out of a walking boot and casts that weren’t designed to bear weight. But for the past eight or nine years, my ankle was stable with little pain — until I put my tap shoes back on.

Every single class has caused me sharp, shooting pain. It was once so bad that I nonchalantly made my way to the barre to support myself. I continued to dance by placing weight on the barre to minimize the pain I felt when stepping on my foot.

Interestingly, it’s not a bleed causing my pain. I have hypermobility, and it affects my ankles, knees, and hips the most. The demands of tap cause my ankles to subluxate, or slightly dislocate. As my podiatrist says, my ankle “jams” and creates sharp pain, rendering me barely able to walk. As soon as my ankle realigns, the pain stops.

If my ankle stays out of alignment for too long, it can cause a bleed. In other words, tapping isn’t the direct cause of the bleed; bearing weight on a subluxated ankle is the culprit. Finding ways to tackle this issue and continue tapping is important to me. I want to continue to participate in activities that feed my soul.

Making dance safer

I appreciate that my medical team understands I’m not going to stop tapping. They work with me to find ways to make it safer.

I’m implementing a few strategies to help. First, I always infuse factor right before I dance. Raising my factor level to normal before tapping is critical protection. I also wear orthotics in my tap shoes to reduce ankle rolling, and I recently ordered a brace with figure-eight straps that’s supposed to help with stabilization. If that’s not enough, I can try an ankle brace with plastic supports, though I worry it won’t fit in my tap shoe and may limit mobility when dancing.

Additionally, I’m asking my doctor for a referral to physical therapy so I can work on strengthening muscles to help prevent subluxation. I’ve also considered bringing a walker to class so I have support in the middle of the dance floor when my ankle slips out of place. That way, when I stubbornly keep dancing with a subluxated joint, I could reduce the risk of weight-bearing damage that may lead to a bleed.

What I’m not doing is quitting. I’m also not letting anyone tell me to give up tap dancing.

To an outsider, this activity may seem like too much trouble — it’s only a tap class, after all. People with rare diseases often face extra challenges when engaging in activities. We can walk away when it gets tough, or we can find ways to keep going. I choose to dance!

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.