Ehlers-Danlos Society

@theehlersdanlossociety | partner
Our strength begins with hope. We are striving toward a time when all those with Ehlers-Danlos syndromes and hypermobility spectrum disorders achieve their right for an early diagnosis, good management, respect and recognition for their condition — time when geography does not determine your quality of life and when you tell some one you have Ehlers-Danlos syndrome, you are not asked what that is.
Community Voices

Representation in Medical Imagery

<p>Representation in Medical Imagery</p>
Community Voices
Community Voices

vEDS Virtual Conference July 30-31

<p>vEDS Virtual Conference July 30-31</p>
Community Voices

vEDS Virtual Conference

<p>vEDS Virtual Conference</p>
Community Voices
Community Voices

EDS ECHO - A free, virtual educational program

EDS ECHO is a free, virtual program for healthcare professionals across all disciplines who want to improve their ability to care for people with Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and associated symptoms and conditions. Continuing education credits are available at no charge to participants.

EDS ECHO Clinical Lead and Director of Education for The Ehlers-Danlos Society, Dr. Alan Hakim, gives an update on the progress of the program and its portfolio, since its inception in April 2019.

Programs 8a and 8b are now enrolling: #EhlersDanlosSyndrome #hypermobilityspectrumdisorder

Community Voices

How did you sleep?

"As an occupational therapist with hypermobile Ehlers-Danlos syndrome (hEDS), “painsomnia” (pain-induced insomnia) is something I come across a lot. I work with a lot of people who have pain and I also live with it. In fact, I had no idea chronic pain wasn’t normal until I was 19. I genuinely thought everyone was in pain all the time. Pain is my “normal” so it must be the same for everyone right? Seems not." Inside the Mind of Someone With Hypermobile EDS at Night
#HypermobileEDS #HEDS #EhlersDanlos #hypermobilityspectrumdisorder

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Community Voices

What a day of pain is like for me #EhlersDanlosSyndrome

I really struggle to properly express the whole situation mostly because I forget that some of my struggles are not “normal.” My family and I have awesomely become in sync so they all know what I will need help with and what I don’t. When the situation comes up, they step in to help with ease. What a Day of Pain Is Like for Me #hypermobilityspectrumdisorder

Community Voices

No Brain, No Gain #EhlersDanlosSyndrome

Dr. Helen Cohen is a Consultant in Rheumatology and Chronic Pain at the Royal National Orthopaedic Hospital, Stanmore, Middlesex, UK. Dr. Cohen joined us to speak about how pain works, and the critical role of the brain in that.

Dr. Cohen touches on medications for pain and looks to give an understanding of both the brain and pain, to give the opportunity to make gains in pain management. Watch now: