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

As our subscribers saw in our recent post, the University of Washington is hosting a meeting of the vEDS Collaborative on July 27, 2018. For those registered to participate via video or phone, we wanted to share a brief post to let you know what to expect. For those who are unfamiliar with the meeting, or want to register to listen in, please visit our 2018 vEDS Collaborative Meeting Page for more details. Introducing the vEDS Collaborative and its Mission In 2017, researcher