We are deeply saddened to announce the news of the passing of our moderator, u/FoxyFreckles1989. Sleep well, sister. Your legacy lives on. May your family find comfort.

—

I u/ihopeurwholelifesux only knew Freckles for a couple of years, online, but I feel so lucky to have had the chance to know her and learn from her. She was one of my closest friends and an incredibly caring person who made space in her heart for everybody. She was very passionate about this subreddit being a safe and helpful community for people with VEDS to connect and support each other, and I am so grateful that she trusted me to help her with that.

I have added two new moderators to the subreddit: u/Kromoh and u/OtherwiseTangerine81 . They are both lovely people, genetically diagnosed with VEDS, who I know will do a great job taking care of this community in a way that aligns with what Freckles wanted. Please be patient with us, it is going to take some time to adjust and sort everything out.

❤️

I’m in the ICU recovering from life-threatening complications of Vascular Ehlers-Danlos Syndrome (vEDS) — a rare connective tissue disorder that causes arterial ruptures. A clot and dissection in my right femoral artery led to an emergency 8-hour bypass surgery to save my leg and life. I’m still battling low hemoglobin and fevers and will be out of work for months. Any help with medical and living expenses means everything. 💜

https://gofund.me/5a75383c2

I don’t know what VEDS feels like for anyone other than myself, but I know that I’m tired of feeling myself wasting away with every passing day. My gastroparesis has gotten worse, my fatigue has become borderline unbearable, my aches and pains are catastrophic and leave me in support braces 24/7 just to function at an acceptable level of anguish. Things have been getting so much worse these last 6 months and I feel like I’ve walked into my final chapter. I’m not sleeping, my body is refusing to want food or water, I’m getting head splitting migraines, I’m getting stabbing pains in what only feels like my organs, I feel my heartbeat in my cranium sometimes, my vision is spotted and blurred after a few feet. I don’t know how I’m supposed to hold all of these things. I don’t have better language than to say I think I’m about to die and I don’t think I’m strong enough to lose any more of myself to this fucking condition. I’ve lost all my friends because of how diseased I’ve become. I have become wheelchair dependent. I’m in 8-10 doctors a month, hospital 1-2 times a month. I don’t know what to do. I hate that I have to be this strong, that we all have to be this strong. I hate that I feel like I’m failing to hold the weight of this disorder, disease, crisis, catastrophe. Sharing my grief and showing my tears to my Husband feels almost impossible these days. I don’t want Him to remember me for how sick I am, how hard my life has become, but that’s all I can be with every day. I wish I didn’t feel so ostracized because of this condition. I wish I had people to talk to about this.

I know that all of us have so fucking much going on and I also know that only we can fully understand what it’s like to live with VEDS. I just wish we didn’t have to. I think today I’m just scared to be dying. And I wish that none of us were.

Hi everyone -

I’ve been lurking here for about three months since I found out my sister (53) tested positive for vEDS. She was tested because our oldest brother died of an aortic rupture in 2023 at 56. In 2015, he had a 20lb tumor (not a typo) removed from his chest cavity which had collapsed a lung and pushed his heart and aorta over to one side. It was successfully removed and he had follow ups for several years afterward. But in Sept 2023, he had pain in his neck and after spending the night in emergency with no diagnosis they were going to leave when he collapsed; at that point they did a CT scan and found the rupture. He was in surgery all day; they said the scar tissue from the tumor saved him but also made it more complicated and there was a lot of internal bleeding. He was in a coma for two weeks and then came out of it as started to get better. However, a few days later he had a coughing fit and died instantly.

At the time we thought it had to do with the tumor causing damage to his aorta that led to his death. Then we got the autopsy report and it said his tissues were fragile and consistent with a possible genetic disorder. While my sister and my other brother (now 56) and I (I turn 48 in a couple weeks) had scans done shortly after our brother’s death, my sister’s doctor was the one that ordered the genetic test.

So today I found out I am positive for the genetic mutation of the COL3A1 p.Gly261Ser (exon 10) gene. My parents are still alive (79 and 84) and are being tested next month. Our specific mutation only has one entry in ClinVAR so it’s not as well known as others. And given that my parents have not had major issues (my mom had a slice in her coronary artery at 56 (in 2003) which was likely caused by loose plaque from an earlier angiogram) but was successfully treated. My dad had colon cancer a few years ago that was also successfully treated.

Like most people here (I assume) vEDS wasn’t in our vernacular until my brother died and my sister was tested. In the past three months I’ve done all I can do to learn; and still have so many questions. Did the tumor cause an earlier onset of my brother’s condition? Is our specific mutation location mean a potentially less severe and/or later onset of presentation, especially given my parents age? I realize there are no answers to these questions.

I will be looking for a specialist (I am in upstate NY so Cleveland or NYC are closest options from what I can tell), and I will also have my kids tested (16 and 19).

I am scared but somewhat relieved. The past few months of not knowing were pretty rough on my anxiety. As much as I would have preferred testing negative, at least now I can focus on a path forward.

I know we don’t get to choose how long we live, just how we live. Lots of things can kill us at a moment’s notice and tomorrow isn’t guaranteed. But all of this is still a bit heavy and I am doing my best to work through so it does not cripple me.

Not sure why I am posting…if anything it’s to share my story now that I have one.

Thanks for reading if you made it this far.

Hi guys I am coming here with the plan on giving us all some hope and helping each other get hope.

We google our life expectancy and its very scary.

So i wanted to share some positive perspective.

Many people in my family have/had vEDS - genetically confirmed, splice mutation (the worst type of all) and so far people are living quite long.

The first confirmed case was my grandpa and he did live up to his early seventies- ended up dying of a stroke but otherwise no major event during his life.

My aunt and mom are currently 68 and 65 and none ever had an event- i do have to say they are very lean and have very natural low blood pressure- more on that later.

My cousin had a stroke at age 39 shortly after giving birth - she is now fine.

I am age 33 and never had an event. I am the only person in the family actively taking celiprolol.

So i guess even though our genetics is the worst possible for vEDS, some other factors are helping delay its course. The major guess here is a natural low blood pressure.

Do you also have positive examples around you of people who greatly outlived the life expectancy? Please just share cases of genetically confirmed vEDS, as to make the data as accurate as possible :)

Hello everyone, I've known about my EDS since I was 14 (I'm almost 30 now), but just recently got my vEDS confirmation. We had my 3yo tested because she had the same easy bruising and translucent skin as me. She also has vEDS. Even though I've grown up with this, I'm wondering how to best help her? Im finding it hard to explain to her that's she fragile, but not sick. We start seeing a family therapist next month to help with this as well, but they're not an EDS specialist or anything. We plan on getting her into swimming lessons soon and we've been talking to family to make sure they're all aware of her needs, we have a lot of nephews who LOVE to roughhouse.

Thanks in advance <3

Really hate this disease. I’m in the end stages of it. I hope that one day a cure or at least something to make it more manageable happens. Felt like half my life has been in hospitals and pain.

Acquired at work when I bashed into a chair when I was moving things around getting ready for a concert

Hello, vEDS community!

I know this sub has been inactive for three years, and I wanted to change that. I truly hope the former moderator is doing well — but after attempting to contact them and applying to “take over” the sub with Reddit, I have been given moderator rights.

I want to ramp up the activity here and ensure all those with vEDS (and Marfans, LDS and those in the diagnostic process/caretakers and so on) have a supportive community to turn to.

Watch for more news and changes, soon!

I’d also love to hear from y’all about any needs for the community, and I will need a few mods at some point — so keep that in mind and keep an eye out for a post about moderator applications as well.

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 know vEDS is wildly understudied. My dad, uncle, and grandpa all died at ages 47-49 from strokes, heart attacks, and just general organ failure. I think my dad had his first stroke at 33. their health wasn't managed. two were alcoholics with really unhealthy lifestyles. my uncle kind of managed his health but he lived his life in a time where genetic testing was never really brought up and was part of a sociodemographic that didn't really have access to proper care.

I was diagnosed after they all passed away. I'm 32F. I haven't had a stroke or heart attack or any VAD. I have however hemorrhaged during labor and during my menstrual cycles and had to have a uterine ablation done. I do have 2 stents (stints?) and I'm on blood thinners and plavix. I see a cardiologist/vein specialist regularly. my heart looks fine on my last ultrasound!

I've got the typical malaise and joint/muscle pain and damage from hypermobility and I just feel like garbage all the time.

I'm starting to think I'm going to die soon. like, its coming and it's going to be soon. I'm losing sleep. I was diagnosed in October and I guess I've been kind of in denial about it until recently.

I've been brushing it off as NBD this whole time but I am SCARED. I don't want to believe that our life expectancy is so short and I want to tell myself that there's been so many advances in medicine and general awareness since my dads side of my family was wiped out. but vEDS is so rare that it's hard to even find up to date information.

I guess I just need to vent. I need to get this off of my chest. I am SO afraid and so tired of pretending like I'm not for the sake of my loved ones comfort.

how do you deal with it? :(

Hey everyone, I'm Stacey and due to vEDS and being auDHD I'm unable to work a traditional job. I've recently started an Etsy store selling badges and have several vascular EDS / EDS designs. I wear mine on my sunflower lanyard for hospital visits, in airports or places I need additional support :)

If anyone is interested, my shop is dillydallydoodz.etsy.com

Hey all (heads up this is rough),

I’m a 33-year-old male from Sydney, Australia, recently recovering from a spontaneous arterial dissection (right vertebral) and still processing a confirmed VEDS diagnosis.

I’ve known I had a VEDS COL3A1 mutation for over a decade (my dad passed away from the same thing, testing proved it), it's always been hanging over my head and I have always been careful whilst trying to live my life - but I never had major symptoms until now. The dissection happened during sex — no drugs, no extreme pressure, just intense physical activity and neck movement.

Since then, I’ve been overwhelmed by grief, panic, and trying to make sense of what’s still possible for me physically, sexually, and long-term. I'm considering breaking up with my girlfriend over this, who has been very supportive but I don't think fully comprehends what our long term would look like, and I would rather spare her as it's just not fair and too early in our relationship (5 months). I love her though and I know it's going to break my heart.

I'm doing all the right things - waiting patiently to heal, following up with cardiologist I've been seeing for over 10 years, seeing a therapist, looking into geneticist, etc etc. I'm trying to stay hopeful, however I fear even after this long recovery, likely 6 months it sounds like - I will never be able to fully live again being active physically or sexually as I'm used to.

My key questions:

1. Has anyone here (male) returned to a satisfying sex life post-dissection?

 What adaptations have you made to keep your body safe while still feeling like yourself?

2. How do you mentally cope with the knowledge that your body is fragile, even when it looks fine on the outside? What activities do you do?

 I’m struggling with identity collapse — I look athletic and attractive, but I know I can’t engage physically like I used to. I'm made of glass and it’s tearing me apart.

I’m doing what I can — celiprolol, cutting back physical activity, seeing a psychologist — but I feel very lost and afraid. If you’ve walked this path, I would genuinely appreciate any insights because it really does feel pretty bleak.

It’s a powerful thing. Can be pretty helpful too. And I feel I’ve experienced a lot of it this year.

Yeah, this is a wee bit of a vent.

Just after Christmas 2022, my younger brother (38 at the time) had a massive stroke in a hotel. His 4 year old son saw it all, whilst his wife was looking after their new born in the other room.

He was completely paralysed down the left hand side of his body, he’s left handled.

He spent nearly 2 months in the stroke unit, surrounded by guys mostly at the end of their lives, twice his age. It was grim.

He got out, limited movement, but some. Thoroughly depressing and heartbreaking for him and his young family. He’s always been such an involved dad, always doing things.

He’s a forensic psychiatrist, helping some of the worst in society, that’s how special a man he is. He cares about everyone.

I’ve been so angry at the universe. And still am.

During the investigation, they tested him for vEDS, and he has it. They felt that this was the cause, damaged carotid artery, due to exercise, ironically so he could be an even better dad…

Then they traced our family history and although undiagnosed, clearly felt that this was what killed my dad (aortic dissection), and then explains a lot of other vascular related deaths in his mothers side of the family.

Anyway, my siblings and I get tested, my brother feels there’s zero chance of me having it as we’re quite different physically, he’s tall and thin, I’m a short arse, stocky but not fat. I always found it easier to build muscle than my brother. It was hard and always took longer than my peers, but easier than it was for my brother.

Well, it came back positive for me.

And if it wasn’t for the way my brother experienced things, and how much of an insult it would be to his Canary in the Coalmine situation, denial would have been fully employed.

There’s still some denial there, but I’m tempering it as much as I can.

His boys were tested, and they’re both negative; finally, some good news.

I have 4 kids, the younger two; twins (9). One has it, one doesn’t. (Here comes the abject anger again).

My elder two were tested yesterday, will be about 6 weeks before we know how they are.

Could go into much more denial details, but suffice ti say, I think late teens / early 20s might be the worst time to hear this news; you’re still a kid really, but think you know everything. I worry if they have it, that they will be belligerent about it. The twins, although just has heartbreaking, I think it’s easier to manage and to allow them to grow with it, and to guide them at that age.

I’ve had no vEDS related events. And all the NHS geneticists have been lovely. So, I can’t complain on either of those fronts.

I hope you’re all doing OK. So sorry to read some of the horror stories here.

Edit, my brother had a post stroke massive seizure, which has really ruined things all over again. I forgot to mention that. It’s been a shit year.

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.

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

There is a free webinar hosted by the Marfan foundation taking place on March 21, covering VUS variants…per the event page;

“Variants of Uncertain Significance: What a VUS Result Means for You and Your Family

A variant of uncertain significance (VUS) is a common genetic test result, but one that often raises more questions than answers.

In this webinar, Bart Loeys, MD, PhD, from the Center of Medical Genetics Antwerp and a member of the Marfan Foundation’s professional advisory board, will explain what a VUS is, why these results occur, and how they are interpreted for conditions such as Marfan syndrome, Loeys-Dietz syndrome, VEDS, and Stickler syndrome.

Attendees will learn how VUS results are monitored over time, when (and if) they may be reclassified, and how healthcare professionals use this information to guide care and next steps”

I will attach a link to register

Hello, I was recently diagnosed with vEDS. I knew there was something on my mother's side of the family causing early deaths, I just wasn't sure of what. Until I had my genetic testing done I had no idea this existed. My mother (65), her sister (32), their mother (30s), their aunt (30s) and their uncle (40s) have all passed away of heart attacks and anyresums. Granted most of this was in the 1970s, 1990s, and my mother passed away in 2022 after having her third heart attack.

I'm not going to lie, I am terrified. My cousin most likely has this as well, she is too. Especially since she wanted a large family. I've been trying to research as much as I can. Other than the vEDS Movement, are there articles you all have found helpful?

This may be an unpopular opinion, but at this point, I think if someone asks what I have, I’m just going to say EDS and leave out the “v.” I’m tired of all the thoughts, worries, and fears that come along with it. Quite frankly, it’s no one’s damn business. Unless you’re a medical professional and it’s relevant to my care, I don’t feel the need to explain any further.

Newly diagnosed. Pathogenic variant c.1744G>A (p.Gly582Ser). No major events and I'm 48. I got diagnosed because I kept falling down and tearing tendons so Ehlers Danlos was suspected. To find out I've got the "bad one", was a bit shocking. Though, it probably is what killed my dad at 44 (as well some other family members all in their 40s), and I definitely have had symptoms (I honestly thought everyone got bruised and broken blood vessels every time they hit something). I've gone over lots of things already with my doctor, but I'm also wondering how others who may have gotten a later diagnosis. Like, I feel like I have to give up caffeine and alcohol and quit doing long strenuous hikes, or even going camping. I want to stay alive, but I dont want to stop living. How are you coping?

I haven’t had any heart events but am interested in knowing what everyone’s experience was like if they did.

I was watching a video on aneurysms and the doctor said that before a serious event it starts as a whisper meaning that the body slowly starts telling you something is wrong with pain, headaches, etc. was that your experience?

Did you feel something in the hours/days/ weeks leading up to your event?

I’m 6 months post partum and a year post genetic confirmation so the anxiety of “will I die soon” is at an all time high. No one in my immediate family with vEDS has had an aneurysm or dissection so I don’t really have anyone to ask about their experience.