In April 2019, an observational study of vascular EDS was published in the Journal of American College of Cardiology (link). The good news i

Recent vascular EDS literature estimated the average life expectancy at 51 years(1). While innovative technologies like gene editing and CRISPR-Cas9 have us optimistic for a vEDS cure, they are still in their infancy. What can be done to extend life expectancy in vEDS now? Look no further than Marfan Syndrome, another connective tissue disorder like vEDS. In 1972, the Marfan Syndrome average life expectancy was 48 years(2). Over the last three decades, Marfan Syndrome life e

When I was first diagnosed, like most people I knew nothing about vascular Ehlers-Danlos. Similarly, many of the doctors who first diagnose vEDS aren't experts either. I learned quickly that establishing the right network around me - both for personal support as well as medical support is absolutely critical. Despite the importance of developing the right team of doctors, too many vEDS patients do not have a Care Team that makes them feel comfortable. At this summer's vEDS Co

I have a confession to make. I've been diagnosed with vascular Ehlers-Danlos for 6 years, but last month was the first time I met anothe

One of the most challenging aspects of suffering from a rare disease can be the feeling of isolation associated with it. Many patients with

Version 2.0 of FightEDS provides even more information about vascular Ehlers-Danlos syndrome for patients and their familes