Bernard Slater Jr.: Hemophilia B Reminds You that No Matter How Strong You Are, You Are Still Human
Bernard Slater Jr., Business and Community Liaison at Charleston Job Corps Center, shared on LinkedIn:
”Some days, Hemophilia B reminds you that no matter how strong you are, you’re still human.
A few days ago, I took a hard fall and landed directly on my hip.
Since then, I’ve been dealing with swelling, pain, a limp, and that familiar feeling that many people with bleeding disorders know all too well, wondering what is happening beneath the surface.
For most people, a fall is a fall. You get up, brush yourself off, and move on.
For those of us with Hemophilia, it’s different.
Every injury comes with questions.
Did I bleed?
How bad is it?
Do I need to treat?
Will I be able to work tomorrow?
Will it get worse overnight?
Last night, I infused Alprolix and today I’m still feeling it. Walking up stairs hurts. Getting in and out of the car hurts. Putting weight on my leg hurts.
The swelling is still there, and while I think things are improving, it has been a reminder that Hemophilia never really takes a day off.
I’ve lived with Hemophilia B for 42 years.
I’ve experienced the days when treatment options were limited.
I’ve lived through the era when many of our brothers in the bleeding disorders community became infected with HIV and Hepatitis C through the very products that were supposed to help them survive.
I’ve watched treatment evolve from plasma-derived products to recombinant factor, extended half-life therapies like Alprolix, and now the possibility of gene therapy.
The science has changed dramatically.
But what hasn’t changed is the resilience it takes to live with this condition.
What people often don’t see is the mental exhaustion that comes with it.
The constant calculations. The fear after an injury. The wondering. The waiting. The decisions.
The fact that even at 42 years old, after a lifetime of experience, a simple fall can still bring uncertainty.
Today I’m frustrated.
I’m sore.
I’m tired of limping.
But I’m also reminded of something else.
Hemophilia has knocked me down a lot of times in 42 years. Not just physically, but emotionally, financially, and mentally.
And every single time, I’ve gotten back up.
So I’ll rest. I’ll heal. I’ll keep moving forward.
And when this is over, I’ll continue doing what I’ve always tried to do, share my story, advocate for others, and help the next person living with a bleeding disorder know they’re not alone.
Some days are harder than others.
Today is one of those days.
Tomorrow, we’ll keep going.”
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