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

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The Ehlers-Danlos Society

The Ehlers-Danlos Society

Күн бұрын

Пікірлер: 28
@daneuenkirchen527
@daneuenkirchen527 4 жыл бұрын
Thank you for bringing awareness to this particularly painful, under-diagnosed disease!!
@phoenix111793
@phoenix111793 Жыл бұрын
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:)
@StrategicSourcingProcurement
@StrategicSourcingProcurement 4 жыл бұрын
Interesting content on EDS, great talk!
@Moreover3
@Moreover3 4 жыл бұрын
How do we get a diagnosis? Most Drs don't know what this is or even believe us? I have almost every symptom
@Moreover3
@Moreover3 3 жыл бұрын
@@zeynand4039 my Dr doesn't seem to care, so not sure how to get them to
@elliet7295
@elliet7295 3 жыл бұрын
Ask to be referred to a rheumatologist for joint problems, and ask them about it because they know more
@amandakate3339
@amandakate3339 3 жыл бұрын
Any idea what labs test for this? Struggling to find one......
@Danieex333
@Danieex333 3 жыл бұрын
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
@mlapointej Жыл бұрын
​@@Danieex333 I just got a referral to a geneticist with a note in my file that I meet the clinical criteria for EDS
@mauve3734
@mauve3734 Жыл бұрын
Interesting I have TNXB and collagen 12
@JanainaBrognoli
@JanainaBrognoli Жыл бұрын
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
@TheEhlersDanlosSociety Жыл бұрын
please reach out to our helpline with any questions you have! www.ehlers-danlos.com/eds-helpline/
@JanainaBrognoli
@JanainaBrognoli Жыл бұрын
@@TheEhlersDanlosSociety thanks =)
@karlbuecker2657
@karlbuecker2657 3 жыл бұрын
What does type four mean
@karlbuecker2657
@karlbuecker2657 3 жыл бұрын
Please someone tell me what type four of this disease means..
@karlbuecker2657
@karlbuecker2657 3 жыл бұрын
Has anyone associated this with a cafe au lait spot
@TheEhlersDanlosSociety
@TheEhlersDanlosSociety 3 жыл бұрын
Hi Karl, type four EDS is vascular EDS (vEDS)
@CynthiaRoses
@CynthiaRoses Жыл бұрын
YAK💔
@kathiemontano4928
@kathiemontano4928 3 жыл бұрын
Don't know anything about this
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