u/Unlucky-Carpenter-10

Recently diagnosed after a genetic test at age 35. I have allll the minor markers. Born with clubbed foot, multiple dislocations, joint problems, easy bruising, large eyes, etc etc. however (knock on wood), I have not had any vascular events, and have no family history of any. I had a completely normal pregnancy, and have had tons of surgeries with no complications. No excess bleeding, etc.

I’m just finding myself confused by the diagnosis, and in a holding period until I see the genetic counselor next month. Would love to know if anyone has the same.

I just got a positive result back from a saliva test for vEDS. I have to meet with the genetic counselor and do more testing. But I am a newer mom, and I’m panicking that this is a death sentence and I won’t see my child live or have more kids. I’m 35. I have an extensive history with disability, dislocations, clubbed foot, big eyes, easy bruising, you name it. I thought for sure it was just EDS and am shocked by the vEDS diagnosis.

I have no family history of heart issues, aneurisms, early death-in fact most of my family members are in great health to very old age. I’ve never had heart issues, bleeding issues and had a healthy pregnancy.

I’m so scared and trying not to get ahead of myself. Are there weaker expressions of the gene? Does it present differently in people and they live longer lives?

Any insight is so helpful as I start to navigate this.

Bilateral clubbed foot from birth-many surgeries, PT, etc. in my mid 30s and the pain is unbearable if I walk or stand for too long (which is not long/far at ALL). As a new parent, just the general tasks of the day are making the pain excruciating. Has anyone had a fusion and it actually helped? The arthritis in my subtaylor joint just gets worse and worse and I feel stuck.

Hello! I’ve had a lifelong disability that affects the mobility of my feet and legs. It’s imperative that I stay somewhat active to maintain a little muscle, but I get so frustrated as I find most at home workout programs inaccessible. I can’t stand for long periods of time or do things like kneel or sit on my knees. I end up so defeated when I can’t follow a video or program. Does anyone have any accessible workouts they like to do at home? Looking for videos or programs!