Notes from the Desk of Hemophiliac

Man, living with hemophilia? It's not just about the bleeds you can actually see, you know? It's this constant knot of worry in your stomach, the ache that just hangs around long after a bruise has faded, and that nagging fear of what's gonna happen next. We talk a lot about the physical stuff, and yeah, that's huge. But what about all the emotional weight? The invisible scars that just build up over a lifetime? Those are the things that really shape us, the quiet battles we're fighting every single day. From when we were kids, we learned to just deal with it, to push through. But the weight of this condition? It's always there, like a shadow right beside us. It messes with our relationships, our jobs, even how we see ourselves. It's a journey that's full of unknowns, but honestly, it's also shown us how incredibly tough we can be. We find so much strength in our community, in our families, and in that stubborn spirit we've got. Still, those in...

There is a kind of strength that doesn't make headlines. It doesn't come with gold medals, standing ovations, or viral news stories. It is the quiet, relentless strength you show when you wake up every morning knowing the day ahead will be a battle, yet you get up anyway. It is the strength of living with haemophilia—not just surviving it, but truly, vibrantly living. Lately, I have been thinking deeply about what resilience really means for our community. It has become such a buzzword in our culture, hasn't it? We are constantly told to "bounce back," "stay positive," or "look on the bright side." But that isn't what resilience looks like when you are managing a chronic condition day in and day out. Real resilience is so much deeper, grittier, and more beautiful than a motivational poster. Resilience: Weaving the Struggle into the Story For those of us in the bleeding disorders community, resilience isn't about bouncing back to some ...

For the longest time, I felt like I was playing a supporting role in a movie about my own life. My role? "The Patient." My script was simple: listen to the doctors, take the medication, and just… exist. It is a strange, hollow feeling, isn't it? Being defined by a condition rather than the person living with it. For years, I felt like a passenger in my own body, watching the scenery go by while someone else held the steering wheel. But recently, I embarked on a journey that changed everything: I found my voice. If you have ever felt small in a sterile doctor’s office or overwhelmed by medical jargon, I want you to know that you aren't alone. And more importantly, I want you to know that there is a way out of the passenger seat. The Shadow of Silence When I was younger, my world was shielded by my parents. They were my advocates, my fiercest defenders. They fought the battles, translated the medical language, and ensured I got the best care possible. I will be forever ...