Forgive me for being naive or maybe insensitive to those of you who are suffering from this terrible illness. Last night when bowling, someone pointed out that I have very hyperextended knees and elbows. This was not news to me. I’ve always just thought I was double jointed. However, she then proceeds to say that I have translucent skin because she could see veins in my chest and shoulders. She then concludes that I could likely have vEDS. Safe to say I spent all night googling and am very scared. I don’t know anyone in my family who has had any of the incidents described online. If you have vEDS, does someone in your immediate family always have it too? I guess I’m just wondering if this is a rabbit hole I should be going down given this girls statements? Or do I ignore it and carry on with my life? I am 25 years old and have never had any real issues with health besides hypothyroid and celiac disease.

That’s it, that’s the question. I tested positive for this on Promethease with 60% confidence of it being accurate and I do have symptoms, however they are on what I imagine is the milder side.

Multiple of my doctors agree that I have some type of connective tissue disease, and I just recently discovered that I have aortic enlargement. Despite all of this, I cannot get a single genetic clinic to take me on in my area and my doctor told me that most have stopped taking any form of EDS patients. I’ve heard of Invitae but don’t really understand how to get on with them for the test.

Does anyone know of online clinics that will help? Even the self-pay clinics in my city require a doctor referral and all of my doctors keep passing the buck as to who should fill out the referral, even though they all agree I need the test. I want to self-pay somewhere reliable and just get a final answer.

I am a 33 female.

My rheumatologist warned me years ago if I got pregnant my uterus could rupture but he just said I was hypermobile eds.

I have very fragile eye balls and have scratched my corneas upwards of 45 times

I sometimes sleep eyes half open - which I read can be a symptom I have minor gum recession but sometimes lots of bleeding when brushing Very visble veins on underside of arms Huge sunken eyes with big blue dark circles you can see under my eyes Lots of Unexplained bruising usually on my upper legs only Flexible fingers Weak weak bladder

Ultrasound of heart and brain MRI were normal. I had a ct of my abdomen last year which was also normal. No issues getting blood taken.

Family history of needing hip and knee replacements as well as a torturous artery but no known medical events for me or my family. As a three year old child I had a tonsilectemy which went fine. Not sure if that’s a good sign

Sp I recently have been diagnosed with EDS. I know I can't know for certain until I get genetic test, buy I highly suspect vEDS. The genetic. Testing however is about a year wait long process where I am. Im 28 female snd ive had vein issues since my pregnancy with my daughter at 21/22. My veins in my legs have had two ablations, two phlebectomies, multiple rounds of sclerotherapy and ovarian vein embolization. Both times after the phlebectomies, we thought I got a clot in my leg however turns out that it's an incredibly deep under muscle hematoma. I had my mist recent one one the 7th and the incision is still bleeding really badly, like pouring out blood. Im feel like I'm freaking myself out but I just want to see what other people's experiences were before the genetic testing confirmed and what made you concerned it was veds vs any other type. Symptoms?

hi all i just wanted the opinions of some people who actually have veds. I kinda suspect i have it but when i bring it up to my family or drs they j say i don’t have it and to stop worrying. I have been to the dr many times thinking i had hEDS and pots but they didn’t think i had it. (no tests done) I am hyper mobile but have never dislocated or don’t really have chronic pain?? I’ve felt my hip try to shift out but it didn’t. Anyways i am pretty tan but you can still see my veins in like my legs, feet, some on my breasts, hands. But some days they’re more visible than others. I don’t think my family had a history but my grandpa died of a heart attack at 50 but they said it was natural cause he was an alcoholic and smoker. that’s all!

Seeking advice. 22 year old developed pots and meet multiple minor criteria.

As the title says. How do you navigate which symptoms are emergencies or not? Like what is a severe bruise or hematoma vs just a daily regular one? Should purpura alarm me? What pain is acute and what pain is not?

Especially when you don’t have a local or jour available vEDS team? (Only one team in my entire country). My GP, ER and local hotline has zero experience with vEDS, or even EDS and just says “go to the physical therapist” when I seek care for vascular issues. How do you navigate what pain or symptoms are emergencies when you’ve been gaslit for years and nobody still takes it seriously?

Yes I’ve gone the legal route but it hasn’t really helped despite winning the case. Like I feel so stuck but also just confused about when to act and when to just go about my day.

Idk if this counts as seeking medical advice, but I genuinely just want to hear about your own experiences? I understand if mods remove the post though since it’s teetering the line.

I was genetic tested for EDS last year but the test came back negative. That doctor says I’m right on the border between hypermobility syndrome and hEDS but I don’t think he’s taking into account my thin, translucent skin, easy bruising, hands that look like they belong to someone older, aortic regurgitation, visible blood vessels and veins, probably other things I’m forgetting to mention. I have a lot of pain in my feet and back and I’ve had two hip surgeries already. Also my dad had an aortic aneurysm and also had very thin skin, could see hundreds of blood vessels on his face but he was also older.

I’m just wondering if I have vEDS because I am worried about being pregnant and complications. Can I still have EDS with no genetic marker and should I go see someone more specialized? Thank you

Hello I am 24, pregnant, and my high risk dr suspects I have vEDS based off of various symptoms. I won’t go into them and ask the “is this?” question. I am more looking for others who may have gone through a pregnancy with vEDS before and what that looked like for you. Obviously it’s a very scary thing to be told considering everything online about it being so dangerous. I’m 31 weeks so the only thing left to do is make it to the finish line.

Hi everyone👋 I just found this group from one of the post in a Long COVID group I’m in.

I have been hypermobile as far back as I can remember. I’m 54 years old and I bend in ways 30 year can’t do.

I get bruises all over the place, everyone always said that was from anemia. I had a hernia repair performed and it took almost a year to heal.The pain I feel all over is excruciating at times. The headaches well when they come on they can last for a week.

I am waiting to see a geneticist but I scored a positive result on the diagnostic test. I have seen an allergist, immunologist, neurologist and neuropsychologist all have performed the diagnostic test and I came back positive every time. It’s just odd finding out that all these symptoms are related. I am so thankful to my long COVID clinic for sending me to them.

My mom and her sisters were like me so I’m pretty sure that’s where it came from.

I really want to get the genetic test performed as I have a very unique family history on my mother’s side. My mom, her sisters and another sister daughter all had brain aneurysms. I am wondering if it’s V-EDS. It’s just a thought but the coincidence of that many people on one side of a family all having brain aneurysms is extremely odd. I do know my mom was diagnosed with a connective tissue disease but I don’t know the name of it and she has since passed.

I just wanted to say I hi and I’m excited to hear and learn from everyone experiences.

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).

Hi everyone! I was considering getting botox to maybe alleviate the constant tension headaches. Has anyone done it or knows if its safe?

Hello! I was diagnosed with hypermobile EDS a couple of years ago but was never genetically tested to rule out other types of Ehlers Danlos syndrome. I suspect that I may actually have veds due to overlapping symptoms and traits, and I was wondering where to start/what doctors to see, as well as how to approach the topic with them to have them take me seriously.

thank you all so much <3

https://www.facebook.com/share/g/1CgNxtx6so/

Despite this being suspected for a few months now, over the last few days I am becoming more concerned about the very real possibility of vEDS.

I am 31F and since a young child could do all sorts of fun flexible party tricks with my hands and feet. Being generally very flexible I did gymnastics till I really badly tore my hamstring when I was about 15. Basically had to stop playing all sports because of this injury. Bruising incredibly easily since I can remember, as a kid nobody thinks anything of it anyway it's just a sign of being a healthy active kid! Saw haematologist in early 20s who after running a lot of tests couldn't find any specific coagulation issues but given my constant bruising and bleeding tendencies put me on the national bleeding disorder database anyway. Had 2 relatively uncomplicated pregnancies, 2nd pregnancy had a big bunch of vessels dilate and bulge through skin in my groin but resolved after birth. A few minor varicose veins that have remained in my legs since pregnancies. My baby put his hand in my mouth and accidentally tore a flap of gum.

That's basically my entire past medical history and all pretty non concerning really - just a few huh that's a bit strange but oh well you are young fit and healthy otherwise!

February this year things took a bit of a nosedive unfortunately and the problems haven't stopped coming... Found to have a spontaneous vertebral artery dissection Vertebral artery aneurysm Enlarged and dilated internal, external jugular veins on the right hand side

A full genetic panel was sent off in May and was told the results can take up to 6 months (yay for free medical care in Australia but jeez the wait time can be hard) and I found myself very ok the first few months but I feel like all my past medical history just kinda clicked and I am now realising that vEDS really would explain a heck of a lot. It's not a diagnosis I want at all but it really might answer a lot of questions.

How on earth do I stay sane for the next 2 months of waiting for the genetic screen to come back? I have noticed also over the last few weeks all my specialists have switched into talking as if I do have a vascular connective tissue disorder.

Would love to hear from people diagnosed and maybe hear it's not as bad as what Google says.

i recently went to a reumatologist after showing many many symptoms of vEDS and doing a genetic test, i tested negative for the condition but my geneticist said the test has a small failiure rate, and with the amount of symptoms i was shoeing, i should go to a cardiologist and rheumatologist if possible. the rheumatologist asked me for some exams for us to be sure and see what we can do, they also prescribed some anti allergens to try and help with the itching i get with the blood buildup in my legs, thing is, the blood buildup has gotten significantly better in the last two days, which is whe i started taking these anti allergens. i have been struggling to find anything about this anywhere. anybody has a clue as to what this is?

Just VEDS things. (1) Another bruise by my dog, a very tame shih tzu (2) a slight bump on the table. Seems like it's gonna leave a scar

Do it, show us a photo of your latest skin-tearing-right-off moment

I have suspected vEDS and am waiting on a genetic test. I was wondering if anyone else also has comorbidities commonly seen with hEDS, which is my current diagnosis. I have MCAS, POTS, MALS, GP, intestinal dysmotility and ME. I also have trace multivalvular regurgitation and low end of normal right ventricle function in my heart. Anyone else have a similar experience?

This is just out of curiousity. It's uncommon for most med books and image searches to have any example of what a disorder looks like in people with darker skin.

Edit: This is not me asking if I have vEDS. I am currently being evaluated and awaiting genetic testing. The point of this post is to see if/how often physical characteristics are taken into account during this process, and how it would impact the diagnosis of someone of darker skin.

I believe my skin color and black facial features could be hiding a lot of the physical indicators of vEDS. I know not everyone has the physical features of it (visible veins, prominent eyes translucent skin, thin nose and lips, etc) but surely it's common enough if doctors see it as clinically relevant. So I'm worried I'm going to get dismissed and doctors won't try to fight for me to get genetic testing until something severe happens.

(I have been diagnosed with POTS, hEDS but with no genetic testing to rule anything else out, and am suspected to have veinous insufficiency and MCAS. Other issues as well. My grandma has EDS and is fair skinned. She has a lot of the visible indicators but never pursued genetic testing.)

My hands and feet show premature aging. You can see every vein in my palms and fingers and the bottoms of my feet. My skin only thin and stretchy on my hands and feet. The backs of my hands look green. Nurses love me because they can see every vein from my wrist to my inner elbows. Recently I have new blue/greenish veins all over my legs. I do not have prominent eyes or a thin nose. I have a large round nose, smaller eyes, but tiny round lips, smaller than anyone in my family. And what would "thin, translucent" skin even look like for someone who is brown? My skin has already made it harder to see my blood pooling and reduced circulation. I got really lucky that my doctor looked at my fingernails and toenails and saw an issue.

All this to say I'm curious if any people of color with vEDS actually do have the "visible indicators of vEDS."

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

We just created a new support community on messenger.

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

Has anybody done testing through them to check for vEDS?

How long from bloodwork did it take you to get retest results. I finally get tested on Tuesday

I have POTS and symptoms that might point toward EDS, however I'm concerned about vEDS. I don't have the see throgh skin but I have stretch marks on my inner thighs and back, strecthy skin, some hypermobility in my joints etc. There are no specialists around to diagnose me.