Shawn of the Bled 🐇✨ #BLM

HIV+ Diagnosed in 87. Authored My Pet Virus and a viral tweet. One of the first HIV+ bloggers online in 1996. Half of Shawn & Gwenn (speakers, lovers, besties)

[Shawn of the Bled 🐇✨ #BLM @shawndecker]

I was diagnosed with HIV at age 11 in 1987. My parents were told I had 6 months-to-2 years to live. I’m turning 43 on Monday and I’ve spent the last two decades of my life educating about HIV through writing, speaking and laughter. https://t.co/DEbD4c7kil

[New York Daily News @NYDailyNews]

19-year-old Kylie Jenner is worth $900 million and on pace to become the youngest self-made billionaire ever.

What are you doing with your life? https://t.co/Bio7RHOjub

[Shawn of the Bled 🐇✨ #BLM @shawndecker]

🎶✨👽🌌🎹🌌🤖✨🎶

[Time Capsule Tales @timecaptales]

In 1969, in an interview with PBS, Jim Morrison predicted the future of music with uncanny accuracy.

At a time when guitar-driven rock and studio ensembles reigned, Morrison foresaw the rise of electronic music and the solo producer-DJ.

[Liz Highleyman @LizHighleyman]

I’ve been dreading this for months, but a lot of people have no idea what’s coming during open enrollment.😕

[Shawn of the Bled 🐇✨ #BLM @shawndecker]

#UEqualsU ❤️✨💯

[Bruce Richman ☮️❤️ #UequalsU @BR999]

A touching & powerful reflection from @shawndecker on turning 50: The Art of Living in the Present
https://t.co/UfpnCVjBip @pozmagazine

[Shawn of the Bled 🐇✨ #BLM @shawndecker]

In the latest issue of @pozmagazine, I share what turning 50 means to me. A symbolic hearse, a mind-bending interaction with my teenage self and…

Probably the best thing I’ve ever written. With much thanks to Gwenn ❤️ #UEqualsU https://t.co/KE4O8HlfAE

[Shawn of the Bled 🐇✨ #BLM @shawndecker]

❤️✨💯

[Kim Kylla Dylla @KyllaCustomWear]

I proudly made this vest that #ErickRowan of the #WyattSicks wore to the ring at #SummerSlam this weekend!! ⭕️ I made a majority of the gear the original Wyatt Family wore and this was a trip down memory lane- I even used the original image I still had from Windham for the logo!

[Shawn of the Bled 🐇✨ #BLM @shawndecker]

Know your true rasslin history, kiddos.

[Kim Kylla Dylla @KyllaCustomWear]

➡️ On this day in 2019 #BrayWyatt debuted his #TheFiend in the garments I designed and sewed for him! This look is my favorite I ever came up with! WWE likes to write me out of the story/credits on this for some reason, but that’s a curse of mine. RIP #WindhamRotunda ⭕️🕯️

[Shawn of the Bled 🐇✨ #BLM @shawndecker]

I was given 6 months to 2 years to live in 1987 after I was diagnosed with HIV. Also got kicked out of school.

Today I turn 50.

Oh, btw in 1992 I was Waynesboro High’s Homecoming 👑 and the commencement speaker in 2007… two decades after the diagnosis! 🥳

Thankful. 🎂❤️✨

[Moon Dragon @frozenaesthetic]

Share a piece of lore about yourself

[Shawn of the Bled 🐇✨ #BLM @shawndecker]

🩸❤️💯

[Patrick James Lynch @pjlynch]

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.

[Shawn of the Bled 🐇✨ #BLM @shawndecker]

💯 same ❤️🩸✨

[Patrick James Lynch @pjlynch]

The difference that treatments makes in the life of someone with hemophilia, like me, cannot be overstated.

Ability v disability.

Life v death.

[Shawn of the Bled 🐇✨ #BLM @shawndecker]

Legend! ✨❤️ congrats! 🥳

[Camryn @dancingofpens]

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

[Ben Samelson-Jones, MD, PhD @DrSamelsonJones]

Do you have #blood? Then a blood transfusion might be lifesaving for you in the future.

The Division of Blood Disorders at the CDC monitored the national blood supply to make blood transfusion as safe as possible. Everyone with 🩸 is now less safe.

[Shawn of the Bled 🐇✨ #BLM @shawndecker]

@CRSRipley @stewartlewis They’d have to pry my agent from my cold dead hands. Incidentally, cold dead hands and I share a similar output rate!
✨🥳 #stillgotit

[Patrick James Lynch @pjlynch]

Women w #hemophilia, #vwd, and other #bleedingdisorders do not receive care on par w men who have these conditions.

It starts with awareness, followed by public pressure, then action happens.

We’re in that third part, now.

Keep spreading the word.

And if a loved one in your life (or you) experience prolonged or unusually heavy periods, I strongly recommend checking out this screening tool: https://t.co/YBolPAAzDO

#womenshealth #raredisease

[Shawn of the Bled 🐇✨ #BLM @shawndecker]

Thanks for sharing, Clive. Appreciate all the work you’ve put in to shed light on this.

[Clive Smith @Clive_Smith_]

Article in @MetroUK today.

#InfectedBloodInquiry

[Matthew Modine @MatthewModine]

My new documentary short, THE INVISIBLE ENEMY, screens this Friday and Saturday at the @santafefilmfest. The film shines a light on cancer-stricken veterans who were exposed to lethal radiation while working at the world's largest nuclear test site. But these service men and women are ineligible for insurance because their exercises were “top-secret" and the U.S. government continues to conceal official records of their ever having been there.

https://t.co/V1EHb8h0Fg

[Shawn of the Bled 🐇✨ #BLM @shawndecker]

@MatthewModine @netflix In my sim, it’s a sequel. With you once again portraying Dr. Don Francis. He’s returned to kick some modern-day arse.

(Congrats on the new series! 🎉)

[Shawn of the Bled 🐇✨ #BLM @shawndecker]

@amandadeibert “… first to start the smoke…” ❤️✨ brilliant writing. Thanks for sharing, Amanda.

[Shawn of the Bled 🐇✨ #BLM @shawndecker]

💯❤️

[haemnet @haemnet]

We agree - women should be included in #haemophilia clinical trials. #EAHAD2025

[Shawn of the Bled 🐇✨ #BLM @shawndecker]

❤️✨

[Shawn of the Bled 🐇✨ #BLM @shawndecker]

@dancingofpens @ashleyimane_ Wonderful news! ✨🎉❤️