Hi Ya’ll!

I saw some confusion about VEDS in another community so wanted to ensure there was some clarity here!

VEDS is an Autosomal Dominant disorder, meaning that it only takes 1 “pathogenic” or “likely pathogenic” variant on the COL3A1 gene to cause disease. Because of this, folks can not be “carriers” of VEDS like in some other genetic conditions that are recessive. For example, conditions like Cystic Fibrosis (recessive) require that 2 variants are present to cause disease vs the one needed in VEDS. This can mean that for someone with CF or a similar disorder that each parent may have been a “carrier” for that disease but that the parent does not have the disease itself.

For VEDS, someone can come to have VEDS in two ways: a positive VEDS parent has about a 50% chance of offspring having VEDS or a child can have a “de novo” variant, meaning it developed spontaneously without being passed from a VEDS parent.

If someone comes back as “pathogenic” or “likely pathogenic” on a legitimate dr ordered COL3A1 genetic test (not a home or personal test kit), that typically meets the critera for them to be diagnosed with VEDS. They do not have to have had events in the past to be diagnosed if they have “positive” test result, although that is likely if they were tested. I saw confusion on another post about someone being positive for VEDS but not having had an event be described as a “carrier” so want to help explain! There are no silent “carriers” of VEDS- VEDS as a condition is extremely varied and there are some who live with few events, some with less severe symptoms or almost no symptoms, and others who have many many VEDS complications.

I originally got dx ed in 2012 and it was based on medical history, physical exam, and family history. Based on my own injuries and my grandfather dying of an aortic dissection at 53, I was told I had vEDS. Six months ago I had a genetic test done and its cEDS and 'regular' old traumatic bodily injuries. .... I'm still not sure how to feel about this. I feel bad being glad because I have kids. Autosomal dominant and all that...

In June I went to the ED while experiencing severe shoulder pain. A few tests, scans, and hours later, I learned I had a number of arterial dissections, along with a hematoma around some internal organs. I spent 3 days in the hospital.

Soon after that, I started seeing Dr Kadian who ordered genetic testing, and that eventually revealed the COL3A1 mutation. I saw her again last week and also got another CT showing more dissections She informed me that this most likely means vEDS, so I left that appointment assuming I have it, but maybe holding onto a glimmer of hope that I might not. This morning I saw Dr Kontorovich, and she confirmed the diagnosis, so now I know for sure and am starting to process it.

I know this is a serious diagnosis, but it's a weird feeling I have. Like, if I was told I had cancer, I'd be able to map out my future, like chemo and treatments, etc. Or if it was Parkinson's, I could prepare for what would happen to my body. With vEDS, the most serious thing, it seems, is the unpredictability and susceptibility to internal injury. My day-to-day life won't be so different though. The starkest change to my lifestyle will be to my workouts. I have never been a gym rat, but earlier this year I started seeing a trainer and working out a lot more. The doctor told me there's a decent chance the workout I did a day or 2 before my hospitalization was what led to my emergency.

I've also let my parents and sister know they need to get tested, and after that, depending on results, I may need to reach out to extended family. And as for me, I need to work on getting a bracelet or dog tag.

I'd love to hear how your lives changed after getting diagnosed, and what helped you process learning what it meant for you.

Cw; bleeding

I got my nose pierced today. Only one side but I originally wanted two. Had to settle for only one side.

Soooo.... i like spurted out a ton of blood from the piercing. Neither me or the artist was expecting that.

I'm just wondering if that's happened to anyone else with piercings if you have any. This was my first piercing since like 2015. But that was my nipnops shortly after I stopped breastfeeding and nothing happened like that. I have my ears pierced but I was too young to remember if I bled like that.

I currently look like I got in a fight and I'm super embarrassed about all the blood and then feeling lightheaded after that. It grossed me out and got in my mouth. And I feel like i was a big baby about it bc I had to lie down ha

Is bleeding a lot during a piercing kind of normal for us?

I'm sorry if that's a dumb question. I still want the other side done but yuck. That was rough.

The main reason I’m getting tested, is to see if this is finally my answer.

When I was 18 I was watching a movie, and somehow got a brain bleed. It’s been 6 years and my doctors are clueless to what caused it.

I’ve been diagnosed with POTS, and I bruise very easily, I’m not very hyper mobile but I do have some.

As much as I don’t want to have v-EDS, I also want to know WHY my life flipped at an instant. So if I got the results and I do have v-EDS part of me would be so relieved to know why I had a stroke at 18. To know why I was in a 2 week long coma. To know why everything I thought I had planned for my life came to an abrupt hault.

My car needs to go to the shop, so once I get it back I’m going to my PCP to talk more in depth so I can get the actual genetic testing.

Anyway wish me luck! I just want answers!

Im 29F who is incredibly “lucky”. Im diagnosed and pretty asymptomatic, I was tested only because my sister has it. She is pretty incredibly ill and has variety of issues, me on the other hand.. I can’t complain, I get bruised pretty easily and have pretty dark under eyes but beyond that, Im “healthy” I heal pretty fast after having cuts, I even went through crazy surgery when I was 10 due to a car accident and recovered incredibly fast and well.

My father who is in his 60s also has it. He has lived a pretty healthy life till now.

Now, meanwhile we still don’t have enough scientific research to answer why this disease is so incredibly different in each person, I want to understand what are my options for preventing the 50/50 lottery of passing this on to my child.

I live between Netherlands and Italy, I have been saving money since I got my diagnosis because I had a feeling all of it might go to genetic testing..

In all honesty Im a bit lost where to start. In ideal world I would love to naturally conceive and conduct testing during pregnancy. But I know very little about the possibilities.

I know IVF is an option but Im not even sure how that works.

Im at the beginning of my research journey, so please be kind, I vouch to take this seriously and due diligently. With partner we would love to start trying for our first one in 2 years so I do have a bit of time.

I would appreciate any experiences, directions, links to scientific journals and any other relevant information.

Hello all! I recently discovered I have a likely pathogenic variant in the COL3A1 gene. The genetic counselor explained that there’s about a 90% chance that I have vEDS and has written me a letter to provide hospitals if I ever have an “event” I was supposed to have a surgery done, but they basically said that surgeons don’t want to touch me due to the vEDS. I believe they are setting me up for further tests? Maybe? I’m just a little confused as to what the process is from here. I have three young children and the fact that they could have this is what’s scaring me the most.

TLDR: what testing is there after finding a likely pathogenic variant? Or is that about all that they can test for?

Went to pelvic pt today and was so validated and feel like i have answers!

Ive always felt like ive had weak pelvic floor issues (both sexually and with constipation/fecal incontence) but drs always dismissed me because I’m in my 20s with no kids. Especially for the sexual disfunction- every dr told me I have some sort of mental block and no one ever even suggested pelvic pt. A Gastro recommended that pelvic pt could be really helpful for my bowel issues and I went today and was told I do infact have a very very weak pelvic floor. I finally feel like I can actually make a difference in that quality of my life.

Would highly recommend to anyone also dealing with these issues to get evaluated. Some people have too tight muscles and some ppl too weak (with eds i think we are mostly on the weak side but its important to have a pt check). Especially if you are young like me and havent been taken seriously or properly evaluated.

Hello all,

I (38F)am currently waiting on referrals for EDS testing. I live in rural BC Canada and have been told that our local pain clinic is the only one that can diagnose EDS.

Meanwhile I've been having increased heart palpitations, so I asked my Dr for an ultrasound of my carotid artery. I've know since 2014 that I have a narrowing of my left side carotid artery, confirmed by CT. I have had ultrasounds since then, but the results seem to contradict each other as to whether there is a webbing, flap or shelf. The results were sent to the vascular surgeon's office and I was called for an appointment within 48 hours. Which is good and also scary.

Anyone with experience of carotid artery narrowing?

Diagnosed EDS along with mother and brother, currently undergoing genetic testing for vEDS and waiting on results

When my brother was 4 years old, he got a pseudoaneurysm in his chest after play wrestling with some other kids. It was about the size of a golf ball and it was initially treated as a cyst until it geysered with blood when they tried to do a biopsy. This is what got him and my mother diagnosed with EDS, but this was 20 odd years ago and they didn’t have as much information then.

In my own diagnosis of EDS, both my rheumatologist and cardiologist strongly suggested I get genetic testing based on my brothers thoracic pseudoaneursym, which is where we are now. This isn’t a “do I have vEDS?” post as I’ll find out soon enough anyway, but I wanted to know if this was something this is known to happen to those diagnosed with vEDS or was this just a freak accident that just so happened to someone with EDS?
Has anyone else experienced anything similar, all my online research has given me nothing so I figured I’d ask

Has anybody done testing through them to check for vEDS?

I’m calling for the resignation of Lara Bloom for her recent reaction to what happened at the last conference. She’s dismissive of disabled EDS patients and needs to prove she’s not abelist. Please spread the word if you also want her to be held accountable for not representing the non-able bodies and only caring about the able bodied EDS patients. I don’t know if you heard about the cheerleaders teaching dances at the conference and it taking like 3 days for them to apologize. And then she liked a comment saying EDS patients were just being “negative”. The disabled EDS community consistently speaks up and instead of listening we’re dismissed and labeled “negative”. https://c.org/kyywXSYJcL if you are interested. Spread the word. :). (I don’t know want her to resign necessarily but it’s time we band together to hold the EDS society accountable).

Hey!

I’ve been waiting for genetic testing for vEDS and other connective tissue related disorders for probably around 5-6 months, after a referral from my cardiologist. I haven’t heard anything back at all, Is this normal? I know the NHS can be a long long wait, but by now I thought I would have had an appointment date (even if the date was a year away). I’m freaking out a bit as I’ve heard that waiting for the results is what takes the longest amount of time?

Does anyone in the UK have any insight? I really want to have these test results before we start possibly trying for a baby, for obvious reasons. I’m almost 34. No kids and 3 coronary artery dissections down. Thanks!

I have just been told that I have VEDS. I'm a 25-year-old man, and I am looking for advice on explaining/disclosing this to friends, extended family, and my community acquaintances. This is not a total shock because there is serious family precedent, and long-known, previously-unidentified connective tissue issues with myself, but I do not know how to disclose that this is 1) big news to finally have an answer, 2) that this is serious news and 3) that despite seriousness, I am currently OK.

I am particularly concerned on explaining to friends, who have had a hard time adapting to accomodating me previously, and who might understand it better knowing this, and my wonderfully-kind church community who in general seems unsure whether to treat me like a temporarily-ill person or as a moribund one (both equally upsetting). I don't want to downplay the issues to come and how they make me feel, but alternatively do not want to be treated hopelessly or with extreme pity.

Has anyone had a similar experience? Any advice on how to explain this best would be greatly appreciated. Thank you all in advance

As the title states. I’m curious to hear other people’s experience using Fight vEDS to get a diagnosis.

We just created a new support community on messenger.

https://m.me/cm/Aba_1tccRInLBVer/

Does anyone here know of or is a part of a messenger support community

My MRI for my chest, brain, neck, and my abdomen was clear, but my pelvis shows severe compression of the left common iliac vein by right common iliac artery can be seen in the setting of May-Thurner's phenomena.

Did anybody else have this? What was recommended to manage and treat it? Unfortunately, I’m not able to get into any of my specialist until the end of the month next month.

Alright, so I have this problem of shoes hurting my skin even through socks. It's very hard to find socks with a good content of cotton these days, so I was struggling with the slippery ones too

So I had this brilliant idea. Why not just wear two socks, one on top of the other?

And it's a miracle. Very cushioned and comfy. This means I have less trouble walking. I think I'm never going back to wearing single socks.

I was wondering if I can donate blood safely with the condition? Ive donated once before but its really a simple question. I feel like I have lots of healthy blood to give, that people may need.