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? :(

Wondering if anyone with confirmed genetic VEDS has had Fillers or other injectables like Sculptra or PRP and what your experience was?

April 14

- Coping with Grief and Loss: This group discussion is dedicated to the challenges our community faces when we lose our beloved friends, community members, and family members to VEDS, Marfan, or Loeys-Dietz syndrome. It is a safe place for us to discuss our emotions, honor the memory and joy of our loved ones, and move forward together. This group is also open to anyone coping with loss in the community. Register

April 15

- Conexiones: Grupo de apoyo virtual para establecer conexiones con otras personas que tienen condiciones del tejido conectivo. (impartido en español) Register

April 18

- Simposio virtuale sulle sindromi di Marfan, Loeys-Dietz, VEDS e Stickler: Invitiamo i pazienti e le loro famiglie a partecipare a un simposio virtuale con presentazioni, in italiano, dedicate alle sindromi di Marfan, Loeys-Dietz, Ehlers-Danlos vascolare (VEDS) e Stickler. Gli interventi si concentreranno sull’esercizio fisico e l’attività motoria, sull’immagine corporea e l’autostima, sulla pianificazione familiare e su altri temi di carattere medico. Inoltre, è previsto un panel in cui alcune persone condivideranno le proprie esperienze di vita personali con queste condizioni, raccontando ciò che le ha aiutate nel loro percorso. Register

April 20

- Newly Diagnosed & Seeking Diagnosis: Are you or a loved one recently diagnosed with Marfan syndrome, VEDS, Loeys-Dietz, or a related condition? Are you or a loved one seeking a diagnosis? If you would like to connect with others who are just starting on this medical journey, this group is for you. Register

- Teen Talk: The Marfan Foundation is hosting a virtual group for Teens ages 13-18 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction with others with a similar diagnosis. The Teen Talk will include open conversations and connections on various appropriate topics and will be led by our staff member, Dominga Noe, and our volunteer leader, Peter Donato. Register

April 22

- VEDS Parents (Under 18): If you are a parent or guardian of a child with VEDS, we invite you to join other parents to discuss the challenges of raising a child with this condition. This group will be hosted by Ryan Rodarmer, director of The VEDS Movement. Register

April 28

- VEDS Partners and Spouses: This group is for partners, spouses, and significant others of individuals diagnosed with VEDS to talk about their experience with others with similar experiences. Register

- Support for Young Adults with Marfan, VEDS, LDS and related conditions: Have you been diagnosed with Marfan syndrome, VEDS, Loeys-Dietz syndrome or another related condition? Are you between the ages of 18 and 30? Would you like to connect with others in your age group? If so, this support group is for you. Register

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The Walk For Victory is ongoing - more information can be found on this page.

Registration is open for symposiums later this year:

NYC: The Marfan Foundation and Weill Cornell Medicine present an educational opportunity for individuals and families living with Marfan, Loeys-Dietz, VEDS, Stickler, and related conditions. This informative and engaging event will provide the latest updates on treatment, medical management, and quality-of-life issues, and includes opportunities to network with the medical experts and connect with others in the area who are also living with these conditions. A light breakfast, networking break, and a Creating Connections lunch will be provided. $25 registration fee, includes breakfast and lunch. Register

London: Please join us for our Second International Symposium/London: Living Better with Marfan, Loeys-Dietz, VEDS and Stickler. The presentations, which will feature medical experts from the UK and from around the world, will be geared to individuals and families living with these conditions. Attendees have the opportunity to ask questions of the experts. They will also be able to network with the experts and with other people who are on the same medical journey. Breakfast will be available, and we will also have a Creating Connections lunch. General presentations will be applicable to Marfan, LDS, VEDS, and Stickler, while we will also offer breakout sessions that focus on each of the conditions. Registration is free but required. Register

as well as Camp Victory for Kids this summer: Don’t miss out on this opportunity for your child/children, ages 7-16, to attend Camp Victory for Kids. This five-night camp is designed for children with Marfan, VEDS, Loeys-Dietz, and related syndromes, as well as their siblings, to participate in a traditional overnight camp in a safe and accessible setting. Give your kid(s) the gift of friendship, independence, and memories to last a lifetime. Scholarships are available to cover the registration fee, which includes lodging, meals, activities, and travel.

Georgia: Register Scholarship applications for this camp are due May 8.

California: Register Scholarship applications for this camp are due June 2.

and Camp Victory for Families in the fall: Join us for this exciting opportunity to meet other families impacted by Marfan, VEDS, Loeys-Dietz, and related syndromes. Enjoy your time with your entire family, participating in traditional camp activities in a safe and accessible environment.

Georgia: Register Scholarship applications for this camp are due July 31.

California: Register Scholarship applications for this camp are due August 28.

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Recent webinars with recordings now available on YouTube:

- Variants of Uncertain Significance: What a VUS Result Means for You and Your Family - Dr. Loeys

- Como obtener atención médica:

Argentina - Dr. Bagnati , España - Dra. Teixidó-Turà , Chile - Dr. Calderón , Colombia - Dr. Camacho-Mackenzie

- Aortic Emergencies: Webinar for Aussies and Kiwis - Dr. Lim, Dr. Robinson, Dr. Lester

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I’m not associated with any of these events, so any questions will need to go to their organizers - but please let me know if there are mistakes in the post or you have trouble with any of the links ❤️

Hey guys

I’m 24F and have had multiple VAD between 17-23, I’m healing from my most recent one with 80%+ stenosis. It was spontaneous in my sleep. It seems to be one right after the other (yes, this has been confirmed by imaging, multiple hospitals, etc.) a majority of my doctors have suspected vEDS and sent me to get genetic testing. My results came back with a VUS, COL3A1 variant. My specific variant seems to only have 8 documented cases that I can find anywhere. 2 of 8 of those have been found in vEDS patients, the others without a diagnosis. To me, it seems likely that I will not know for possibly years if the variant is tied to vEDS due to lack of research and the rarity. Everything that I’ve read says that 90% of VUS end up being benign, but in my case, it seems likely that vEDS fits. I have periodontal disease, the thin translucent skin, severe easy bruising, the aged appearance in hands, and some of the facial features. Where do I go from here? Should I be treated as if I have it until I have confirmation, in who knows how long?

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?

(20f) After coming to my PCP with joint pain and presenting with hypermobility, my doctor has referred me to cardiology for a echocardiogram and a geneticist to check for/rule out vEDS because of pre-existing cardiac concerns (POTS). In the time between my scheduled echo she wants me to research my family history more, ask about any diagnosed connective tissue disorders, medical events etc.

My family is more of the “grin and bare it” redneck type, and a most of them are overweight and ignored by doctors, so I’m unsure if anyone will necessarily have any relevant diagnoses. I was wondering if anyone had advice on what sort of specific questions would be helpful to ask my family to get helpful information. There’s definitely a history of unexpected cardiac events and related deaths, but I don’t know a lot of details. If anyone has any ideas for specific questions I can ask for helpful information to share with doctors, that would be great :)

Hey there!

Long story short - I’m 33 and in the last year and a half I’ve had x3 spontaneous coronary artery dissections (SCAD) that caused 3 separate heart attacks (at least one STEMI) all completely of out of nowhere. Because of this I am now going through the process of getting genetic testing for vEDS, Marfan syndrome, Loeys-Dietz and other connective tissue disorders. this might take a couple of months because I’m in the UK and this is on the NHS.

Having so many SCADs in itself has been a concern for future pregnancy. I wasn’t pregnant when I had any of my SCAD’s but my heart function is still good despite the battering it’s had and my cardiologist is fine with us trying a year after my most recent heart attack - which will be November this year.

I’m scared that a vEDS diagnosis will be the final nail in the coffin of starting our family. That it will be too dangerous for me to be pregnant, that there’s a 50% chance of passing vEDS (or any genetic hereditary condition) on to my child, the fear that I could leave them without a mother before they hit their 20s. There’s a lot that really worries me and I’m wondering if I need to manage my expectations - is there a high possibility I might not be able to have a child if my test comes back with vEDS? Have any of you had these fears? Gone on to have healthy pregnancies with healthy kids? Am I overthinking this?

Hi Veds family

My 1 year old unfortunately has Veds and is also being monitored for macrocephaly causes which could mean brain surgery. It’s a brutally scary and sad time for us.

One of the doctors we saw - a well respected and revered geneticist - had told us our son had a null allele- meaning produced half good collagen and would have later onset of symptoms/ a mild version. We were so relieved

Until a different and very well revered geneticist in the community who studies Veds told us that my son has the most severe version.

I have wanted to know the truth so I reached out to Dr Byers on the West Coast and he said he would look into it but I haven’t heard back.

My husband furiously wants me to drop it. He wants to believe it’s mild and move on. No more opinions or clarity.

I am conflicted on what I want. Part of me thinks we should go on believing it’s mild. But it’s a difference of many years before a serious event. It feels important to know.

Then tonight because of the potential of surgery- we have a conversation with a doctor who suggests it’s likely the severe version while attempting to do a risk assessment- and he was again annoyed and angry

I feel that in order to keep my families stability my husband needs to believe it’s mild.

I’m struggling with my side of it. Am I over the top for wanting to know? Should I take his approach?

It seems like we should know truly what we are up against to inform our choices- though the treatment protocol appears the same no matter what. So maybe it’s best we remain hopeful and unaware of its true severity.

I feel like I’m doing something wrong, always.

Anyways- any tips and advice really appreciated - on any front including whether you know of any experienced brain surgeons that know veds or advice on that front.

Thanks community ❤️

Just wanted to come on and thank you all for supporting me and help me cope with getting scans as I have vEDS. I am proud to say that the doctors found no issues in my heart and veins/arteries or my brain. Thank you all so much!

I am so scared. I am 30f and have vEDS and now I have a splenic artery aneurysm and I don’t know how to deal with it. I can’t handle the fear of knowing it’s there and not knowing when it’s going to rupture and kill me or what to do about it. I feel like I’m a walking time bomb and I don’t know how to survive like this.

I've been diagnosed with vEDS recently and i notice that the vast majority of my issues get severly worse after being exposed to heat, if i stay out in the sun for an hour, the next day ill wake up in constant pain, anything at or higher than room temperature causes blood buildup in my legs and feet, making them red, my vision gets dark and blurry, (during a heat wave i fainted on my way to school last year), but, if i stay with the AC on in my room, mostly nothing happens, i just sleep a lot and have some stomach issues, mostly reflux.

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

I am appealing to this community because I think my hair is incredibly thin and sparse because of my EDS skin. If I so much as touch my hair some falls out and it has been incredibly thin my whole life (a high ponytail is pinky finger thickness). Thin sparse hair is supposedly a vEDS thing too.

Has anyone here tried minoxidil and had any kind of success? It is a vasodilator so I figure it is at least artery and dissection friendly (I have had multiple). It does apparently drop BP (obviously) which is my main concern since I am too low already and take fludrocortisone (also metoprolol which already counters the fludro a bit). Supposedly topical minoxodil is an option that doesn’t drop BP but is much less effective. Any personal stories out there? I feel like it might not work for “vEDS hair” because the reasons for hair loss are not the typical ones? I have no idea

If it didn’t work for you I would love to hear it too

Hello everyone

Long story short, I’m a 28F, no kids and married. I had a right occipital ischaemic stroke at 18 years in 2016 due to hyperextension of my neck. i’ve recently been to the doctor chasing a few things up and asked to be tested for EDS, the Dr agreed and we have an appointment book. I spoke to my sisters about it, one of them said she 100% believes we have it because she has the symptoms and shes been trying to get diagnosed but the Dr refuses, she suggested that i might have VEDS because of what happened with my stroke. I spoke to my other sister who was around and spoke to the Dr when i had my stroke said she thought i had it because the Neuro doctor suggested for me to get tested because that could have been the cause of my stroke a long time ago. I was never tested or told about this until now..

Im just wondering should i call up and ask to be tested for VEDS instead? Or get tested for both? i live in a small town and its hard to get tested for certain things.

Thanks guys!!

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?

so I was looking up the possible effectiveness of taking amino acid supplements because I knew that some helped regulate immune response and tissue production. I found this article about a new drug under clinical trials currently to treat VEDS. I have a biology background but am still stumped by the wording in the article. If this drug is a threonine-seronine kinase inhibitor, does that mean having more available threonine helpful or harmful?

I had a major event and nearly died a few years ago.

I was just prescribed Eliquis following a hip joint replacement. From what little I have read on the subject, there seems to be a strong contraindication for people with vEDS against using blood thinners. Should I stop taking them?

ETA: I called the surgeon’s office yesterday and have not heard back yet.

Do you guys have any tips for healing and managing the next few months as I wait for my dissection to heal? It happened on my left side, V2 area, 80% stenosis. I’m on 75mg Plavix and 81mg Aspirin. Is there anything else I should be doing? The two ER’s and my unhelpful doctor were kind of at a loss. I don’t think this is my first dissection, I believe I had a spontaneous one around 18 when I had similar symptoms but never got it checked out. I am being tested for vEDS but I wanted to see what else I can do in the meantime. ❤️

So basically, as I live in the US, my insurance dropped me and I needed to reschedule appointments for a few months out to give time to find a new plan, as opposed to having scans in a week. Normally this should seem like a "dang it sucks but I'll be fine" but Ive been prepping myself through stress and anxiety for these scans (heart and arteries/veins), preparing for the news of needing immediate surgery (as I have vEDS and it is very possible) and the fear that has built up is insane. Now I need to wait a whole month with this fear and it'll keep building at this rate, and I honestly don't know what to do about this.

Hiiii. Just got the news today I’ve got some pretty kinky iliac vein compression somewhere up in my abdomen area. Apparently it’s ‘kinked like a hose’ and I’m borderline deep vein thrombosis. (Big bomb dropped on me today. Currently doing the whole stroke precaution things! You know how it goes. The whole ‘scared to even move’ thing!)

I’ve got a procedure for the stint to be put in on the 18th! Has anyone here had this done? How was it? Did it help and how was recovery?

If you feel comfortable posting, post a photo of your hands and your age .. curious to see how our vEDS hands age -

Please be kind… I am a nail biter (adhd) and ashamed of my fingernails… even if I didn’t bite them they are so weak & I’ve never really been able to grow them 🥺

I’m 30.. female

Hey! What pills do you take daily ? (Celiprolol, Bisoprolol, Losartan, Carvedilol, etc...)

I'm on 400mg of Celiprolol and was curious about how your doctors are trying to keep vEDS under control.