Ehlers-Danlos Syndrome, Marfan Syndrome, Loey-dietz Syndrome : Genetic Connective Tissue Disorders
gatheringroses42
February 9th, 2015
Hi! These conditions (which sometimes result in disability) are not listed.
I have Ehlers-Danlos Syndrome diagnosis, but they're trying to rule out Marfan.
Anyone else?
floatingstarrylights
May 3rd, 2019
I have POTS and EDS, so I get how the chronic pain and nausea can get to be unbearable some days.
Blueboy0520
February 18th, 2021
I have eds and am 21!
alekseiii
February 25th, 2021
I have Marfan Syndrome! Get genetic testing via Invitae for every single type of EDS/Marfan/Loeys Dietz. It’s $150 without insurance and no referral needed and well worth it. I was misdiagnosed with vEDS clinically so don’t just let them test you for one or two genes when you can get al of them for less than that price lol. My advice.