Shawn of the Bled 🐇✨ #BLM

Share a piece of lore about yourself

I found myself getting angry during a work meeting last week. Over coffee, a colleague told me about a skeptical physician who spoke up during a hematology meeting and dismissed the idea that patients with von Willebrand Disease were in need of treatment. Sadly, I'm not unaccustomed to hearing ignorant remarks from "experts" in healthcare, and this wasn't even something I heard directly. Nor is von Willebrand Disease something that impacts me or my family, personally. So why was this so upsetting? I figured it out this morning. July 2nd is the exact middle day of the (non-leap) year. There's your Fun Fact for the day. I know this because my little brother was born on July 2nd, 1988. Tomorrow he would have turned 37, had not an untreated head bleed cost him his life at 18. For years, Adam's story has been a lesson in why protection from devastating bleeding events is crucial in the life of someone with a bleeding disorder. In fact, the standard of care for a person with severe hemophilia, like Adam, is the routine administration of treatment that prevents bleeding in the first place. But apparently people with von Willebrand Disease were born with the wrong bleeding condition. Even if it is far more popular. To zoom out, the CDC estimates that there are approximately 30,000 males in the United States living with hemophilia. It is unclear how many females are living with hemophilia. The US has a population of approximately 340m people. If around 30,000 have hemophilia, we're talking about .001% of the population. (Proud member, happy to be here!) Von Willebrand Disease is literally 1,000x more common. vWD affects up to 1% of the population (3.5M people), with symptoms that include frequent and prolonged nosebleeds, easy bruising, heavy or prolonged periods, mouth bleeding, and beyond. Of equal importance to the symptoms and data are the lived experiences of people actually living with-- or caring for someone with-- von Willebrand Disease. I hear stories of people whose periods last for weeks, keeping them from school, work, and life; people whose gums bleed so easily they refuse to go to the dentist- or out on a date. Children whose bruising is so frequent that Child Protective Services are called. Post-surgical bleeding that's so bad that a routine procedure becomes a life or death emergency. I wish I believed these things only happen rarely, but I hear the stories. There are too many stories. And that's why I got angry. There are too many stories that demonstrate that protection from bleeds is critical. And when 1% of the population has a bleeding condition that science is trying to solve for, shouldn’t we be championing that progress? So to whoever you are out there, dismissing people’s bleeding symptoms for one reason or another, please slow down, and give a second thought to what patients and caregivers are telling you. On behalf of the Lynch brothers, we’d appreciate it.

The difference that treatments makes in the life of someone with hemophilia, like me, cannot be overstated. Ability v disability. Life v death.

Can you believe my fourth (????) book is out tomorrow? I can’t 😭

he was real as fuck for this