Vascular Ehlers-Danlos Syndrome (vEDS)
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Published 2020-05-15
Potentially fatal effects include arterial aneurysm, dissection, and rupture; bowel rupture; and rupture of the uterus when pregnant. Life span is often affected.
This awareness video hopes to highlight some of the experiences of the community living with vEDS, the impact on their families, the importance of education and research, and hopes for the future. There is no better way of hearing what it is like to live with vEDS, than from individuals who have vEDS themselves.
The Ehlers-Danlos Society is proud to be a member of The Vascular Ehlers-Danlos Syndrome Collaborative, a group of patients, family members, researchers, and clinicians, dedicated to developing a patient-centered plan for scientific research, to improve the management of vEDS, and to increase the quality of life for all those impacted by the condition.
A vEDS diagnosis is most often sought because of family history; someone’s medical history; or pregnancy complications at a young age. Confirmation helps rule out other possible causes for symptoms as well as establishing a clear need for medical surveillance, treatment, and study of family members.
After diagnosis, the first priority is assembling an integrated care team to provide a clinical and social support network for the individual and their family. Management is complex and requires multiple specialists who can respond to and manage major complications.
In 2019, The Ehlers-Danlos Society launched vEDS ECHO: a program led by Dr. Sherene Shalhub dedicated to increasing awareness and education in all aspects of diagnosis and management of vEDS.
VEDS ECHO is a revolutionary program that seeks to support health professionals around the world in caring for patients with vEDS. Clinical experts run a program that covers the main aspects of vEDS. Participants are able to share their cases and questions in the sessions and are guided to further educational materials and support. Continued Medical Education (CME) credits are available at no charge to participants. www.ehlers-danlos.com/project-veds-echo/
The Ehlers-Danlos Society offers monthly virtual support groups for those living with vEDS and their families, and also a group dedicated to parents; those who have vEDS and those who have children with vEDS. www.ehlers-danlos.com/virtual-support/
We are delighted to be hosting a dedicated event for vascular Ehlers-Danlos syndrome (vEDS) on July 31, 2021. Join us as leading experts present the latest research, management, and scientific information on vEDS and comorbidities. We will be offering live translations during this event in English (original language), French, German, Spanish, and Japanese. Register and learn more here: www.ehlers-danlos.com/eds-echo-event-series-vascul…
Much more awareness is needed of this type of Ehlers-Danlos syndrome, it is important that health professionals are educated in the presentation of vEDS, genetics and familial impact, possible implications and surgical interventions, and treatment guidance. The Ehlers-Danlos Society is committed to improving the lives of those impacted by vEDS, and facilitating global awareness and education. Our strength begins with hope. ehlers-danlos.com
All Comments (21)
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My son passed away last December from an aneurysm and we found out then that veds existed and he had it. It was the day after his 22cd bday. I'm glad he lived a full life hiking and doing all the physical things he did without fear or anxiety. I wish we'd had him longer 😔. We donated his organs so he continues to have a positive impact on other's well being.
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I have just almost died from vEDS. I am so thankful and happy to be alive and I am so thankful for this video!
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I have vEDS 😢 I‘m 29… Silent strokes, Carotis dissections and aneurysms in my head…inoperable. And my joints go out. Many operations… 20! I lost my baby last year 💔 But I think positive! Love you zebras 🦓 Stay strong!!!
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I made a friend online with a lovely human being who had vEDS so I am learning as much as I can about it so I can best support her and others with this illness.
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This condition is so heartbreaking. I hope a treatment is developed soon.
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I have VEDS & love this video. VEDS is so isolating because its rare & no one understands. Seeing this reminds me that I am not alone in this fight #zebrastrong
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An hug at all zebras.❤
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Thank you so much for doing this video. Love to all!
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A Finnish cEDS patient here. Love you.
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So powerful. Thank you to the EDS Society for doing this.
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Thank you I too have VEDS as well as HEDS and so much more lol happy and positive has made it so I can be 51!! Love this video!!
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I just heard about it today from someone and I'm amazed at the strength you give to the society
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Thank you all for working so hard to create a resource and a community. I was very much looking forward to the walk in April and the conference. Hoping Covid19 goes away soon so I can have an opportunity to meet you all.
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Such a good video!
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i’m currently in the process of gene testing for veds and this makes me a little less scared about the whole thing. still nervous about how the testing will turn out tho 😬
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I got diagnosed with hypermobility EDS and getting tested for VEDS and I'm really scared. I want to be here for my family. Every story I hear from this video I relate. I had a seizures and dislocated both my shoulders and have had multiple surgeries to fix them. IDK how to feel
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God bless you all. I have EDS hyper mobile.
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I have Vascular EDS. Unfortunately I have lost three babies at a very late gestation. Was successful with two Praise God! My bowel ruptured at 49 years of age. Was very very lucky to have a surgeon willing to do an exploratory and found two feet of my bowel was dead. Nothing appeared on the CT or ultrasound. The Emergency Doctor wanted to send me home. Needless to say I would hove died that night. Right now my chin have separated from my gum line due to an old surgery. Stitched are denigrating instead of holding the chin in place?
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I read my genetic test last night. I am so afraid. I am 43. I don't want to die. Five years to live now.
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Newly DX EDS, Mast Cell....PAIN, failed spinal fusion. LOSING HOPE
