It's okay to play around with A.i. gif...as long as it's pics of you, right?
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#snowbunny
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Man Googles rash, discovers he has one-in-a-million rare disease | CBC Radio Ian Stedman suffered from red eyes, migraines, skin rashes and joint pain all his life. Dozens of MDs failed to diagnose him. So, he lived with it. Then his daughter was born with the same symptoms.…

“I started searching for pictures of peoples' #rashes. You're throwing everything at the wall to see what sticks. You're looking everywhere to figure out what you're supposed to be looking for.": buff.ly/Ng86vDy

from cbc .ca
#SkinDisorder #RareDisease #ChronicPain #MuckleWellsSyndrome

Man Googles rash, discovers he has one-in-a-million rare disease | CBC Radio Ian Stedman suffered from red eyes, migraines, skin rashes and joint pain all his life. Dozens of MDs failed to diagnose him. So, he lived with it. Then his daughter was born with the same symptoms.…

“After looking at thousands of online photos of strange #skindisorders, Ian found one that looked familiar on a #raredisease website. "I saw my skin." It was an obscure #geneticdisease called #MuckleWellssyndrome": https://buff.ly/3W8VpyB #ChronicIllness

ENCORE: Man Googles rash, discovers rare disease Podcast Episode · White Coat, Black Art · 2024-11-14 · 27m

In 2016, I met Ian Stedman, a man who "Googled" his own rash and diagnosed a one-in-a-million rare disease called #MuckleWellsSyndrome. Here's his story. And coming up in a few weeks, how AI is changing rare disease diagnosis.
podcasts.apple.com/ca/podcast/e...

I attended the wonderful @CAFsociety #FamilyDay event in King City today, w\ my 11yo daughter. We connected w\ other families, clinicians & researchers. Tonight we take our next doses of #Ilaris to treat our #MuckleWellsSyndrome. @CdnANetwork @CanadianRDN @Novartis #RareDisease

A special thank you to Dr. Monica Justice at @SickKidsNews for sending this opportunity my way. Am always happy to talk about #RareDisease #Advocacy & my own diagnosis with a #genetic #autoinflammatory disease called #MuckleWellsSyndrome.

His life-threatening genetic disease went undiagnosed for 30 years — then his newborn got it.



#RareDiseaseDay2021 @globalnews @MeghanCollie #MuckleWellsSyndrome @CdnCAPSNet @raredisorders

My first-born daughter (I have 3) was only 1 year old when she too was diagnosed with #MuckleWellsSyndrome, an #autoinflammatory disorder (learn more here: ). Answers were nice, but our #diagnosis also turned our lives upside down.

While I had always been sick, it hadn’t defined me. Having something to label my #symptoms with shouldn’t define me either. I was already a lawyer when I was Dx'ed with #MuckleWellsSyndrome in mid-2014 & I was afraid that going public w\ my diagnosis would hurt my career.

We got to talking about my story and my plans, incl. why I had gone back to become an academic, etc. I told Erika a bit about what it was like for me to live with #MuckleWellsSyndrome (a monogenic disorder) and what gave me hope for a different future for my daughter...

Thank you @seastarbatita for so diligently live-tweeting my talk. Wow, you kept pace incredibly well!

#GeneticsSociety2019 #raredisease #MuckleWellsSyndrome #advocacy @raredisorders #BeRareAware