Groin Older: Aging With Hemophilia

As a child born in the mid-70s with hemophilia, I was part of a unique generation. Access to new treatments made a more "normal" life possible, or at least one with less time spent in a hospital.

A bleed for the previous generation would result in numerous days – sometimes weeks – in a hospital. By the time I was old enough to play farm league baseball, things had advanced to the point where bleeds could be treated quickly, even at home!

Of course, at the time, I didn't realize I was living a revolutionary step forward for the bleeding disorders community. I was just trying to avoid getting beamed by stray baseballs or whacked by flailing friends in the playground.

I'd be remiss if I didn't mention the blood safety issues that would, tragically, monsoon storm on the short-lived parade. For members of the bleeding disorder community still here in the aftermath of that 1980s blood crisis and its fallout, we are finally experiencing a new wave of innovative and life-changing treatments.¹

We're just a lot friggin' older now.

Series of bleeding episodes bookend my life

Overall, all things considered, I'm doing well as I close out the last 2 innings of my 40s. The biggest issue with hemophilia is my arthritic left ankle, which decides whether it will have a good or bad day without my input on the matter.

In my ankle's defense, at least it lets me know quickly and in no uncertain terms when it wants some attention. Gravity's unrelenting attack on these incredibly intricate and amazing bodies is both fascinating and humbling.

The last 10 years and the first 10 years of my life are when I've experienced the most sustained series of bleeding episodes. Being a kid, you're just more reckless by nature. As an adult, the reasons for treating aren't as interesting.

A turning point in my daily routine

Where aging and aging with a bleeding disorder intersect is where we begin my next story – the silliest injury of my life, which, on its own, required no treatment. So, drumroll, please. I got injured while I was...

Putting on my pants. My elastic-waisted, elastic-ankled joggers.

When it happened, I knew it marked a turning point. So it's good that it happened in such a silly way as not to be ignored. The days of rushing to put on my pants were over. I'm already super slow and just naturally careful of my movements and observant of my surroundings. Now, I guess I gotta train that watchful eye inward a little bit more.

Fleeting pain, lingering effects

The groin pain was sharp but fleeting. With a little more caution, I could complete the daily ritual that is pantsing myself. Soon, I was going about the rest of my day, then my week, without nary a thought of the morning when my pants waged war on my body in a cowardly and unprovoked attack. Until...

One night, I was taking out the trash and accidentally backed into the gate. The solid, startling jab caused me to jump back. A groin muscle did not approve of the sudden movement, and the pain caused me to drop the trash bag and crumble to the ground.

"ARRRRRRRAHHHGGGAOUCH!" I screamed out in pain like Arnold Schwarzenegger after the Predator lands a telling blow.

Groin pain, yoga, and clotting factor

I can't deny that I'm getting older after I've not only injured myself putting on my pants and taking out the trash but also using a 36-year-old pop culture reference to describe the events. Matters weren't helped a week later, when my short yoga routine was cut short by the tightness in my groin.

When I stood to roll up my yoga mat, the sharp pain that had felled me by the gate overtook me. I kept my feet, but my big toe shouldered a lot of the weight of my body. Since I'd never noticed my heartbeat in my big toe before, I decided to treat myself with clotting factor.

Over time, my groin muscle healed. I even returned to my light yoga a couple of weeks later. On the second day of yoga, I noticed that I could stretch that wounded part of my body further and with less discomfort. I truly enjoy how noticeably better my body feels after just 15 minutes of stretching.

Aging with hemophilia

Aging is a pain, but it's a luxury that isn't lost on me. I'm here for as much of it as I am fated. And I want that time to be as enjoyable as possible, which means balancing the avoidance of unnecessary injury with an understanding that some things cannot be seen coming.

That's what makes life fun, right? Treating bleeds because I got injured putting my pants on actually makes me laugh. I revealed that at a gathering with friends, as we all shared the indignities of aging.

Let's enjoy and learn from the ride as long as we can. Thanks, as always, for reading. Do you have a story about aging with a rare disease? Share in the comments below, or visit our stories page and submit yours.

Follow along on Shawn's journey – check out part 2: Groin Wiser: Adopting New Strategies to Manage My Rare Disease.