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

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.

[@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:)

[@drdavidscullyphd1669]

Interesting content on EDS, great talk!

[@Keeperofloveys6]

How do we get a diagnosis? Most Drs don't know what this is or even believe us? I have almost every symptom

[@Keeperofloveys6]

@@zeynand4039 my Dr doesn't seem to care, so not sure how to get them to

[@elliet7295]

Ask to be referred to a rheumatologist for joint problems, and ask them about it because they know more

[@amandakate3339]

Any idea what labs test for this? Struggling to find one......

[@Danieex333]

just got my testing done today! you need to find a geneticist that specializes in EDS. Its really hard to find one because not a lot of doctors know about it. Just look up in your area with dr's that know about it and usually they can recommend one for you. Feel free to ask about anything :)

[@mlapointej]

​@@Danieex333 I just got a referral to a geneticist with a note in my file that I meet the clinical criteria for EDS

[@mauve3734]

Interesting I have TNXB and collagen 12

[@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 😳

[@TheEhlersDanlosSociety]

please reach out to our helpline with any questions you have! www.ehlers-danlos.com/eds-helpline/

[@JanainaBrognoli]

@@TheEhlersDanlosSociety thanks =)

[@karlbuecker2657]

What does type four mean

[@karlbuecker2657]

Please someone tell me what type four of this disease means..

[@karlbuecker2657]

Has anyone associated this with a cafe au lait spot

[@TheEhlersDanlosSociety]

Hi Karl, type four EDS is vascular EDS (vEDS)

[@CynthiaRoses]

YAK💔

[@kathiemontano4928]

Don't know anything about this

[@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.