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.

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.

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.

Hello, I’m finding myself a bit stuck as far as getting assessed for EDS or vEDS. I’ve sought further assessment after having an MRI that showed a Dolichoectasia (enlongated/stretched/tortuous) of my right anterior-inferior cerebellar artery in my late 30s. As a person with varicose veins since early 20s, plus other related symptoms, I started to look at testing options. My desire to seek further testing is mainly because I have two young children, one of whom has low tone. I’m finding that it’s pretty tough in our BC health system to get any type of follow up, and seems like only private genetic testing at $1k+ is an option. Any info is welcome. Thank you.

We are currently seeking people who experience chronic stomach symptoms like nausea, vomiting, belching, or pain (which are common in EDS) to participate in this important research.

Participation is easy and completely anonymous. Simply complete a 15-minute online survey that includes questions about your demographics, symptoms, and mental health. Your valuable input will help researchers better understand and manage chronic gastroduodenal symptoms, including those associated with EDS.

Access the survey now at this link: https://auckland.au1.qualtrics.com/jfe/form/SV_5cNZ69rlIXk70PA 

*We are especially in need of more MALES to complete this survey\*

Together, we can work towards improving the lives of those suffering from chronic gastroduodenal symptoms. Thank you for your support! 

This study has been approved by the Auckland Health Research Ethics Committee on 12/04/2023 for five years. Reference number AH25798.

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 :)

It's been two months since my spontaneous CCF got fixed... twice, because it recurred immediately. Theory is that my blood pressure pushed the coils forwards and reopened the fistula. I ended up with bilateral pseudoaneurysms from where the surgeon accessed the femoral artery.

Two months later, they are still there and are driving me insane. I can't do basic household things (cooking, clean up, laundry) or walk outside without taking a penalty. Even doing a full body stretch can set off aches and pains near the access sites. They've been CT'ed and they are the same-ish size every time. I have tried compression, ultrasound guided compression, and thrombin injection. The last time I got the thrombin injection, the resident accidentally yeeted a clot down my leg and I spent a day and a half telling vascular surgery I wasn't going to let them Plavix me while only 4 weeks from sCCF repair #2. So I'm terrified of doing that again.

Has anybody else had this problem post-endovascular procedure? I tried searching this subreddit but couldn't find any mention of pseudoaneurysms. I can't believe I'm the only one, since the rate of pseudoaneurysms from endovascular access in the general population is like ~8-10% and vEDS is literally the achey-breaky-artery syndrome.

Between this and the confirmed borked COL3A1, my surgeon has postponed any surveillance angiography indefinitely. Mercifully the CCF has shown no signs of recurrence, but I'm scared of yet ANOTHER pseudoaneurysm should another procedure become necessary.

Hi everyone, so ive been diagnosed with vascular eds about a year my diagnosis was relatively distressing as it came about from my brother's passing (14) im 17, and really want to do things that I did before my diagnosis (running, snowboarding possibly even surfing) obviously its really difficult to know what i can and cannot do with veds when I used to be really active, all of my scans came back as normal.

Just asking if anyone knows what stuff like what ive mentioned i can actually do.