What’s in a name?
Those of you who visited our site this week may have noticed a “little” change. After almost a year of being known as FIGHT EDS, we’ve officially changed our name to FIGHT vEDS (www.fightveds.org). Although the “v” is just one letter, we recognize how much that little “v” means.
Why does the “v” matter?
Vascular EDS shares a common bond with many disease families - The 13 different subtypes of Ehlers-Danlos Syndrome, related connective tissue disorders, and others. Still, vEDS is a unique disease in many ways. Some very important statistics for vascular Ehlers-Danlos Syndrome are:
Prevalence: vEDS impacts an estimated 1-in-50,000 to 1-in-200,000 people, implying ~1,500 to 6,500 people impacted in the US (1)
Life Expectancy: A life expectancy of 51 years (1)
Early Onset: Medical literature has noted an early onset of symptoms in vEDS with 25% of individuals experiencing a major complication (such as arterial dissection or rupture) by age 20, and more than 80% by age 40 (2)
Why the name change?
We changed our name because vascular Ehlers-Danlos Syndrome is unique. We started FIGHT vEDS as a group of patients, family members, and doctors focused on providing easy-to-understand information on the distinct, complicated disease that is vascular Ehlers-Danlos Syndrome.
Since we launched, the feedback on our site has always been appreciation for an informational site for vascular EDS and the vascular issues facing the Ehlers-Danlos community. In response, we’ve added that “little v” to our name to make our vascular focus clear. Our site continues to be relevant to other subtypes of EDS, particularly those with vascular complications and we will not hesitate to help others understand the vascular issues of their disease.
How can I learn more about the vascular form of EDS?
Our website is meant to be a non-profit resource for anyone to learn about vascular EDS in a way that doesn’t require a doctor to translate. But we’re also here to help answer other thoughts on your mind. Please join the FIGHT vEDS Forum to ask questions of the community - we will actively monitor the questions and provide answers.
We’re dedicated to vEDS and the vascular issues that impact the Ehlers-Danlos community. Thanks for taking part in the fight!
The FIGHT vEDS Team
Byers PH, Belmont J, Black J, De Backer J, Frank M, Jeunemaitre X, Johnson D, Pepin MG, Robert L, Sanders L, Wheeldon N. 2017. Diagnosis, natural history and management in vascular Ehlers-Danlos syndrome. American Journal of Medical Genetics Part C (Seminars in Medical Genetics). 175C:40-47.
Pepin MG, Murray ML, Byers PH. Vascular Ehlers-Danlos Syndrome. In: Pagon RA, Adam MP, Ardinger HH, et al., editors. GeneReviews [Internet] Seattle, WA: University of Washington, Seattle; 1993–2016. [accessed June 25, 2018]. Updated Nov 19, 2015.