Hi! I wanted to ask and see if anyone knows of any spaces for vascular ehlers danlos syndrome? Ive recently started posting on instagram but I would love to connect with others who are diagnosed with veds or even other eds subtypes!
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.
I was diagnosed with vEDS after a horrendous birthing experience which resulted in exploratory surgery (requiring 20 vaginal stitches and 3 units of blood) and a peritoneal fistula. I also have two carotid pseudoaneurysms, but other wise do not seem to have other complications. My mom was diagnosed the year prior.
I have had back and hip pain for many years on and off and recently had severe pain in my leg, hip, and back prompting MRIs. I found out I have severe arthritis in my hip and several bulging discs in my l4/5. Whether or not these findings are vEDS related, I've been told I need a total hip replacement (I'm 43). Does anyone diagnosed with vEDS have experience with this type of procedure? I understand they are fairly straightforward, but I'd like reassurance that I should move forward. Doctors arent being especially helpful. I'm still shopping around for one that seems halfway knowledgeable or at least willing to do some research and take extra precautions. Any advice would be appreciated!
Pretty much exactly what the title says. My fiancé (m24) has vEDS and has recently become quite scared of the future. What do I do to support him without minimizing his fears. I don’t want to add undue stress about symptoms and life expectancy, but I do want to be able to offer support and reminders on how to do things safer. Also, how do I personally prepare for any emergency situations? I know they are likely to happen and I want to do it in a way the makes it quick/clear for the medical providers while comfortable for my fiance.
He has not had any emergent medical events, but does have many complications due to vEDS including a spinal fusions, heart defects, eye problems, and vascular issues with his organs.
I have researched these topics, so I know the basic symptoms and signs to look out for. I am looking for what maybe works for you that wouldn’t be online or what is specifically reassuring during fearful times, but I will take any suggestions or personal stories :)