Marfan Syndrome

https://www.genome.gov/Genetic-Disorders/Marfan-Syndrome

https://marfan.org/conditions/marfan-syndrome

https://en.wikipedia.org/wiki/Marfan_syndrome

I see a lot of posts where people are connecting through shared experiences with disabilities / medical conditions.

I then searched for one i was born with that has affected my life in several ways. If there is anyone looking for others with this genetic disorder on Mastodon / the Fediverse feel free to connect if you'd like. ❤️

#MarfanSyndrome #Marfan #FBN1 #Genetics

Marfan Syndrome

I searched for the hashtag and don't see a lot here. While our numbers aren't huge, we do exist and i'm sure there have to be others who also have this genetic disorder.

Anyone seeing this feel free to connect if you'd like. ❤️

https://marfan.org/conditions/marfan-syndrome

https://en.wikipedia.org/wiki/Marfan_syndrome

https://www.genome.gov/Genetic-Disorders/Marfan-Syndrome

#MarfanSyndrome #Marfan #FBN1 #Genetics #Disability

JAMA Patient Page

What Is #Marfan Syndrome?

📌 Marfan syndrome is a disorder that affects connective tissue throughout the body. It is an autosomal dominant genetic disorder, so people who have a parent with gene variant have a 50% chance of inheriting the variant that causes Marfan syndrome.

📌Marfan syndrome can affect the heart, lungs, blood vessels, bones, eyes, and skin. It’s estimated to affect 1/5000 individuals worldwide, with equal frequency in M and F

https://jamanetwork.com/journals/jama/fullarticle/2804050?guestAccessKey=5164ac7a-686a-48c3-947e-145cbc62dd8f&utm_source=silverchair&utm_medium=email&utm_campaign=article_alert-jama&utm_content=olf&utm_term=041423

US government agencies should create a disability benefits law for people with #EDS and #MCAS (similar to prior that for HIV and AIDS patients), and/or make an EDS and MCAS division in VICP to compensate those of us with injuries

We need to make better Covid vaccines, too

Any vaccine injury compensation or disability benefits laws regarding this should also apply to #Marfan syndrome and the 200+ other connective tissue disorders likely in similar or the same situation

Please check out myaorticjourney.org - my story plus a growing list of resources for aortic disease education, awareness, management, research, and support. #aortaed #aorticdissection #tad #htad #marfan #loeysdietz #veds #bav #cardiogen #cardiology

#GrantWahl died from #aortic #aneurysm

These are often undetected until life threatening

Wahl’s brother encouraged everyone with a #tall, lanky body type and especially pectus #excavatum to get checked

Aortic #aneurysms are associated with #Marfan and #EhlersDanlos syndromes #EDS