Hemophilia No Longer Prevents Me From Participating in Physical Activity

“Beep, beep.”

I leap out of bed at 10 a.m. on a Saturday. My plans for the day include geocaching, a wonderfully nerdy hobby in which I hike through forests and urban areas to find hidden boxes. The GPS on my phone leads me to containers that have a logbook I can sign.

Geocaches are hidden all over the world.

Shellye poses with a geocache she found. (Courtesy of Shellye Horowitz)

Next, I head to the local nursery to buy more seeds and vegetable starts. My garden needs to expand! Any day I can get my hands dirty in my garden is a good one. I recently shoveled gravel and laid pavers for a new walkway.

“Beep, beep.”

At 9 a.m. on Sunday, I quickly get out of bed to meet my friend at our local trailhead. We hike our steep local trail every Sunday, looping it twice to get in 3-4 miles in an hour. We stop and look at the ocean, hoping to see a whale, when we need to catch our breath.

Increasing activity levels

Today, I am more active than I have ever been previously in my life. I ride an indoor bike 75-100 miles a week, go on one to two weekly hikes that are at least 3 miles (and sometimes as long as 10), and participate in an international folk dance group. I also tend to my garden daily, planting, watering, and ripping apart pallets to build my own planters.

When I was in elementary and middle school, I struggled to keep up. My ankles constantly hurt and were always a little swollen. I was told the pain was not bad and I should “suck it up” and continue.

In middle school, I fought back tears when we had to run a mile for a fitness test. I was called unmotivated and lazy, yet I was neither. I was just in pain and could not keep up.

A doctor who listens

Obtaining a proper diagnosis and access to appropriate care allowed me to become the physically active person I always longed to be. I am so grateful to my hematologist. She listened to me and thoroughly reviewed photos of bleeds and my history. 

She understood that the pain from bleeds was slowing me down. She believed me. She helped me access care that dramatically improved my quality of life. 

When I started prophylaxis (treatment with clotting factor to prevent bleeding episodes), I was struggling to maintain the level of physical activity I need for my mental health. Riding my bike and dancing were causing me pain and triggering joint bleeds. I would dance for a week or so and then be off for two weeks while I infused with factor and waited for my knee to heal. 

Game changers

Prophylactic treatment was a game changer for me. It allowed me to infuse before high-risk activities and keep myself safe. I had significantly fewer bleeds, which meant I got to dance, ride my bike, and hike more often.

With access to prophylactic treatment, many people with hemophilia are able to be active and even consider themselves athletes. Some have even played contact sports, though that can be controversial. Individuals with hemophilia who want to be active and safe should consult their provider for a treatment and fitness plan.

One thing that makes me unique is that I have mild hemophilia and use prophy; many people usually think that only those with severe or moderate hemophilia need it.

I know multiple men and women with mild hemophilia on prophylactic care. All have said it has greatly improved their lives. I believe that in time, more people with mild hemophilia will have access to this treatment as medical professionals become more sensitized to their unique needs.

The National Hemophilia Foundation has shared guidelines regarding the safety of certain physical activities. Many healthcare providers use this tool to create a prophylactic treatment plan. The hope is to keep people with hemophilia both safe and active.

Shellye zipping through the trees. (Courtesy of Shellye Horowitz)

“Zip, zip.”

That is what I did through the air with my daughter last week, confident that I was fully protected. It was my second time zip lining, and I am certain there will be a third.

As for this weekend? You will find me dancing, hiking, and gardening. Can you keep up?

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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, and are intended to spark discussion about issues pertaining to hemophilia.