Do have VEDS and struggle with what information to put on your medical ID or medical alert bracelet? You are not alone. Individuals with VEDS are at a high risk of life-threatening complications like arterial ruptures and dissections (including the aorta), organ ruptures (particularly the bowel and uterus), carotid-cavernous sinus fistula, and lung collapse. It may feel daunting to…
The VEDS Movement is a member of the vEDS Collaborative, a research group led by Sherene Shalhub, MD that has worked to bring together doctors, researchers, and individuals with Vascular Ehlers-Danlos Syndrome (VEDS). The vEDS Collaborative is currently enrolling individuals in a natural history study, and is planning a clinical trial to compare the effectiveness of medications currently used…
On August 25, 2019, the international Advanced Journal of Emergency Medicine (AJEM) published an article titled The Current Status of Genes and Genetic Testing in Emergency Medicine: A Narrative Review. The article included a description of VEDS (Vascular Ehlers-Danlos Syndrome), as well as the importance of the genetic testing information to the emergency physician. We at The VEDS Movement…
The VEDS Movement is excited to announce the launch of its website for the VEDS community, TheVEDSMovement.org. “This is a huge step towards reducing the confusion between Vascular Ehlers-Danlos syndrome (VEDS) and other forms of Ehlers-Danlos Syndrome (EDS),” said Katie Wright, director of the Movement. “The website is also designed to provide the VEDS community with the most up-to-date…
The VEDS Movement is pleased to announce four new virtual support groups for the VEDS community. This effort is spearheaded by Katie Wright, director of The Marfan Foundation’s new VEDS division. Each support group will meet once a month using online meeting technology. Those who are unable to join online can participate by phone. “We are very excited to…
The Marfan Foundation, which saves lives and improves the quality of life for people with Marfan, Vascular Ehlers-Danlos (VEDS), Loeys Dietz, and other genetic aortic conditions, is expanding with a new division dedicated to programs and support services for VEDS. The Foundation has named Katelyn Wright, a highly regarded patient advocate in the VEDS community, director of the new…
For parents of a child with a connective tissue condition like VEDS, worrying is a daily habit. The beginning of a new school year is especially stressful. Not only do you and your family have to get back into the routine, but you and your child also have to “break in” a new teacher and sometimes a new school…
This year, for the first time, The Marfan Foundation livestreamed the medical presentations that were featured in the Annual Conference general session. Now, the recordings of these presentations are available – for free. The presentations that comprised the general session we think were most relevant to the VEDS community were: FDA Warnings and Recalls – Shaine Morris, MD, Pediatric…
The Marfan Foundation, in association with Texas Children’s Hospital, will hold its 35th Annual Conference in Houston, July 11-14, 2019, and – for the first time – a track that focuses solely on Vascular Ehlers-Danlos syndrome (VEDS), a condition related to Marfan, is offered. Nearly 75 families with VEDS, which affects about 1 in 50,000 people in the US, are already registered….
Statement from The Marfan Foundation with respect to FDA rejection of celiprolol for exclusive use in treatment of individuals with Vascular Ehlers-Danlos syndrome to prevent or control aneurysm, dissection, and rupture of major arteries On June 25, 2019, the FDA announced that it has rejected Acer Therapeutics’ application for exclusive use of the third generation beta blocker celiprolol in…
