Category: veds collaborative

Dr. Sherene Shalhub

Dr. Sherene Shalhub

Sherene Shalhub is a vascular surgeon who has been working with patients with Vascular Ehlers-Danlos Syndrome (vEDS) alongside Dr. Peter Byers, who was also featured in a special episode of Staying Connected last month.

Sherene took some time during our weekend at the Marfan Foundation Annual Conference to talk to me about her story and experience with vEDS, including her work to further research and human connection through the vEDS Collaborative. She has been an amazing advocate for those with vEDS, and has become family to me.

If you want to enroll in the vEDS Collaborative Natural History Study, visit vedscollaborative.org/get-involved

If you have vEDS and want to be on this podcast, or just want talk to someone else with vEDS, reach out to me at thetranslucentone@gmail.com

Aaron

Aaron

Aaron is 33 and was diagnosed a year and a half ago with vascular Ehlers Danlos Syndrome (vEDS). He tells us his story of diagnosis and events that he has experienced so far. He also tells us about his father’s story with vEDS, which was undiagnosed when he passed away two years ago.

This interview was done in person over the weekend that the vEDS collaborative met in Seattle.

To make a donation to the vEDS Collaborative, https://app.mobilecause.com/vf/vEDS

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!