Classic-like Ehlers-Danlos Syndrome - Serwet Demirdas, MD, PhD

The Ehlers-Danlos Society
The Ehlers-Danlos Society
8,891
0
Published 2020-04-16
Dr. Serwet Demirdas is a Clinical Geneticist at the Erasmus Center in Rotterdam and has several publications concerning clEDS and other types of EDS. Along with seeing many patients in daily practice, Dr. Demirdas is a member of the international EDS Consortium and is part of the rarer types working group. She coordinates the research for clEDS in the Netherlands, and is working closely with medical professionals in the Netherlands, the UK, and Belgium on research concerning clEDS and vascular EDS. Join us for this webinar, as Dr. Demirdas gives an overview of clEDS, and talks about current and ongoing research in the area.

Slides used in this presentation are available in PDF from bit.ly/3dLU4FV.
All Comments (12)
  • @daneuenkirchen527
    Thank you for bringing awareness to this particularly painful, under-diagnosed disease!!
  • @phoenix111793
    Some of this flow was challenging for me! I have Eds and am currently exploring different types of dysautonomia. BUT even tho parts were challenging, it was my first time back doing yoga since I was diagnosed. I was told yoga was not a good option for me, even though in my past I did yoga at least twice a week! It used to make me feel strong! So thank you for introducing me back in and challenging me! And especially for your kind words and patience! Thank you:)
  • @Bookkeep9
    How do we get a diagnosis? Most Drs don't know what this is or even believe us? I have almost every symptom
  • @amandakate3339
    Any idea what labs test for this? Struggling to find one......
  • @mauve3734
    Interesting I have TNXB and collagen 12
  • @analarson2920
    Thank you for sharing, wish doctors were better versed and learn how to prepare patients better for medical treatments and vaccines and to do detox since eds patients are so compromised, but really for any compromised patients.
  • @JanainaBrognoli
    Thanks for this video! I did those websites genetic tests, it shows I have mutation on TNXB, not sure is enough for this EDS, I'm not sure what kind of EDS I have, but I do have shorts toes and slight scoliosis 😳