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r/vEDS

▲ 4 r/vEDS+1 crossposts

Do people with vEDS get prescriptions of cortisol

Hi, question in the title. Cortisone injection fuck me up good, and now we are pushing me toward long term cortisol for my new pots ! When im positive this was the primary cause....

Im in a wait time hell of health care including genetic testing(im at 3 year and still waiting). Does some of you get those prescription ? are they considered safe because here the only answer a get is I don't know but this is the meds and refusing taking it as a treatment refusal.

My brain fog is so bad im missing every single moment of my kids life, and I, unable to express myself properly because im always looking for my words... So im at the point of saying fuck it and take the meds that messed you up in the first place. Better that than the rest of the option

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u/SnooBananas1064 — 5 days ago
▲ 4 r/vEDS

Worried sick my wife has vEDS

Her neurologist said he thinks she probably has it and that’s what he’s going with until the test proves it or disproves it as the other “EDS” ones have been ruled out by testing.

She’s 40 years old. Has no family history at all of vEDS, Doesn’t have the classic skin issues at all. doesn’t have veins showing, Doesn’t bruise easily, has almost no visual classic face features of it. Had no issues or any signs of anything until earlier this year when she had an artery dissection at the back of her neck while she was under intense stress ever since that she has had the regular symptoms of a artery dissection (neck pain, some dizziness, headache, nausea etc.) but it’s healing well the scans are showing and the rest of her arteries look as good as they can from what the scans visually show.

She also had a cornea tear that she had eye surgery for. Because of both this and the neck dissection this is the 2 reasons why he thinks she has vEDS. If she does have it I really hope it’s the Null mutation (which is where the COL3A1 gene is half producing and not fully turned off - so not AS bad) From what I’ve read if vEDS shows up later in life and you don’t have the classic features then it points more towards that.

I know she needs the testing to confirm. She’s now awaiting the testing but it’s going to take many months and the thought of this is killing me. Thank you for the help and insight. Much appreciated.

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u/Hopeful-Surround-995 — 7 days ago
▲ 94 r/vEDS+1 crossposts

It’s REDS4VEDS Day today, May 15th!

REDS4VEDS Day is a global campaign that takes place on the third Friday of May each year to help raise awareness of vascular Ehlers-Danlos Syndrome (vascular EDS), a rare genetic disorder.

REDS4VEDS was launched in May 2015 and is hosted by Annabelle's Challenge. The campaign continues to gain momentum year on year helping to raise awareness for those who are touched by vascular EDS, it is also a great way to raise vital funds for research.

The format for REDS4VEDS is free and simple to get involved with:

• ⁠Wear something red
• ⁠Take a picture
• ⁠Share on your socials using the hashtag #REDS4VEDS

Participants are encouraged to engage through places of work, school, and colleges. You can wear as much or as little red as you want just so long as it’s red! The key to the success of the campaign is the hashtag #REDS4VEDS which helps pull the campaign together.

reds4veds.org
u/redfoxxy23 — 7 days ago
▲ 8 r/vEDS

Urgent referral to oncology. Suspected lymphoma.

I haven't told anyone. I've had a swollen node in my hip since November. I didn't even know it was a lymph node. Though it was just a fat lump or another bulging vein or something idk. and I started getting back pain and just a whole bunch of other symptoms I've written off as connective tissue/vascular/dysautonomia issues and I thought i was just going through a super long "man i feel like crap today" phase or flare or whatever you wanted to call it. I even posted about just not feeling well not too long ago. Apparently a lot of what I'm experiencing are sometimes hallmark "b" symptoms of lymphoma. Along with the other icky symptoms of something serious going on.

Well... the ultrasound results on my groin and hip were troubling to say the least. Pcm then discovered hard and swollen nodes all in my neck, left armpit, and behind my knees. I got an "Urgent" referral to oncology to discuss my results and get more imaging and decide where to take a biopsy from and how to even do it bc fragile tissues or whatever. My first appointment is a week from now. I'm on a ton of prednisone to help slow tumor or cancer cell growth/spreading (or something like that "just in case". And it will "hopefully help some of the inflammation too". My mind kind of went blank when oncology was brought up) until then but its not doing much for the swelling.

Would be really cool if someone went through something similar and was completely fine ha.

I feel so.... regretful? Ignorant maybe? I'm not sure what the word is I'm looking for. It was just so easy to write off what I'm feeling as dysautonomia or hormones bc I've been written off by doctors for as long as I can remember.

Not entirely sure why I'm posting this. I guess I just need to get it out because i dont feel comfortable talking about it with anyone in my support team yet. Plus i don't want them to worry about me. And I'm going to feel really silly for stressing if the biopsy and scans come back fine but if they don't... from what I've read vEDS and cancer treatment can be a very slippery slope. I am worried about that. Like.... super worried.

Anyways. Pay attention to your bodies. I literally never even knew i had lymph nodes in these places. I spent so much time and effort into freaking out and learning as much as i could about the vascular systems we have that I just didn't care to learn about stuff like this. My bloodwork is better than it's ever been though! So i guess there's that!

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u/Suitable_Towel_7590 — 7 days ago
▲ 9 r/vEDS

May 2026 - Webinars, Support Groups, Events, News

Sorry this is going up a bit late - I had almost everything put together for this to be posted last week, but Reddit didn’t save the draft.

May 12

- 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

May 13

- VEDS Parent Support Group for Adult Children: If you are a parent of an adult (18 years and older) with VEDS, we invite you to join other parents to discuss your experiences. Register

May 16

- NYC/Tristate Symposium: Living Better with Marfan, Loeys-Dietz, VEDS, & Stickler: 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. $25 registration fee, includes breakfast and lunch. Register

If you are unable to afford the fee, there is information on the page for assistance.

- REDS4VEDS Day: Wear Red, Take a Photo, Share it on your socials: #REDS4VEDS. Social media toolkit, merchandise.

May 18

- 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. This group is not designed to offer therapy or counseling but rather an opportunity to speak on the highs and lows of living with chronic conditions and be more connected with others in the same age group. Register

May 20

- Support for Parents/Guardians of Children w/Marfan, LDS, related conditions: Are you are a parent or guardian of a child with Marfan syndrome, Loeys-Dietz syndrome or a related connective tissue condition? Is your child 18 years old and younger? If so, we invite you to join other parents to discuss the challenges of raising a child with one of these conditions. Register

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

May 26

- 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

May 27

- 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

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

Registration is open for 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 were 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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Registration is also open for 2 symposiums later this year:

- Barcelona - 3 de octubre: Simposio Internacional en Barcelona: Claves para una vida plena con Marfan, Loeys-Dietz, VEDS y Stickler. Este programa celebrará íntegramente en español. Las presentaciones, impartidas por expertos médicos de España y otros países, estarán dirigidas a personas y familias que conviven con estas condiciones. Los asistentes tendrán la oportunidad de hacer preguntas a los especialistas, así como de establecer contacto tanto con ellos como con otras personas que comparten una experiencia médica similar. Se ofrecerá desayuno y también contaremos con una comida especial titulada Creando Conexiones. 
Las presentaciones generales abordaran los síndromes de Marfan, Loeys-Dietz, VEDS y Stickler. Además, habrá sesiones paralelas enfocadas específicamente en cada una de estas condiciones. La inscripción es gratuita, pero obligatoria. SIMA dispondrá de un espacio independiente con actividades para niños de 5 a 12 años. Registrarse

- London - Oct 10: 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.
The Brompton Fountain is offering onsite activities during the symposium hours for children ages 5-12. Register
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If you are a healthcare professional or scientist, registration is open for an event in September focusing on the genetically defined EDSs: The Ehlers-Danlos Society is delighted to be hosting the Precision Medicine for Genetically Defined Ehlers-Danlos Syndromes event, taking place on September 3-4, 2026, in Ghent, Belgium. This is a hybrid event that can be viewed from anywhere in the world, in over 60+ languages. This event is for healthcare professionals, researchers, scientists, patient representatives, and policy-makers alongside representatives from pharmaceutical, biotechnology, diagnostics, digital health, and related healthcare organisations. Tickets are a bit pricy. The call for abstracts from researchers and clinicians is still open as well, until June. Register
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Recent News and Publications:

- The VASCERN Medium Sized Arteries Working Group has released a consensus statement about the use of angiotensin II receptor blockers (ARBs), specifically irbesartan in combination with a beta blocker, in VEDS patients. PDF, More Information The page also notes that they are “currently working on the production of consensus statement documents on various topics such as in vitro fertilization (IVF) and pre-implantation genetic diagnosis (PGD) in vEDS.”

- A case series was recently published looking at pregnancy in 6 women with known vEDS. Read here

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Studies Recruiting VEDS Patients:

- The Collaborative For Longitudinal Aortic Imaging In The Young (CLARITY) is still enrolling patients. This study is looking at long-term aortic changes to develop better guidelines for children and young adults with genetic aortic conditions. It seems like this one is only working with patients from the US & Canada, but I wasn’t able to find confirmation of that being a requirement. Information and enrollment

- Metabolic phenotyping in individuals with vascular Ehlers-Danlos Syndrome. The University of Cambridge is looking for 15 adults with a confirmed genetic diagnosis (proof of pathogenic variant required, VUS not eligible) to complete some testing at Addenbrooke’s Hospital that will look at whether there are differences in their fat tissue when compared to healthy subjects. They are most interested in those with glycine substitutions, but all pathogenic variant types are eligible. More information and contact form

- Co-Producing and Piloting an Exercise-Based Lifestyle Intervention for Individuals with Vascular Ehlers-Danlos Syndrome. Researchers at Sheffield Hallam University are now inviting adults with vEDS, their family members, and healthcare professionals to take part in the research study exploring experiences of physical activity, lifestyle, and wellbeing. The study involves interviews, optional online group discussions, and (for some participants) an optional 12-week online lifestyle programme. You can choose which parts, if any, you would like to take part in. This one has been funded by Annabelle’s Challenge and The Ehlers-Danlos Support UK. More information and contacts

- The ORCCA Study is still enrolling athletes with a confirmed diagnosis. This study is looking at outcomes for individuals in competitive sports with cardiac diagnoses, and VEDS is one of the eligible conditions. More information and enrollment

- The celiprolol trial in the US seems to be recruiting. I thought I read that it was not going to be moving forward? As far as I can tell, it is happening. Participation in this study requires you to stop taking any beta blockers you are currently on, though you are able to continue other blood pressure medications. 50 patients will receive placebo and 100 will receive celiprolol. More information and enrollment

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If you are reading this and formatting is awful, pls come back in an hour or so - I’m posting from mobile and it tends to mess things up that I have to go back in and edit

u/ihopeurwholelifesux — 12 days ago