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.
Post
See full photo

Representation in Medical Imagery

We are committed to working with our community to dismantle inequities in healthcare as we continue to strive in our mission to give hope to and improve the lives of people affected by EDS and HSD.

Currently, we are working to create a comprehensive understanding of how race, gender, sexuality, age, body shape, mental health, disability, economic situation, and other identities and lived experiences can impact access to care, diagnosis, and understanding.

As part of our Breaking Down Barriers initiative, we are looking to actively play a role in diversifying the public medical imagery of people living with all types of EDS and HSD. For example, one of the minor diagnostic criteria for vEDS is “translucent skin” has historically been misinterpreted to mean “pale.” instead of the increased visibility of typically hidden features such as veins or tendons through the skin.

For Ehlers-Danlos syndrome and hypermobility spectrum disorders, there is a major problem with diversity understanding and the way that symptoms are displayed on non-pale skin. With this, we have seen discrimination, lack of diagnosis, and improper care due to white skin bias and lack of proper research within the global EDS and HSD community. Inspired by Malone Mukwende’s initiative to diversify medical imagery and Chidiebere Ibe’s priority to decolonize curriculum through amplifying the need to explore how symptoms present on darker skin tones, we are seeking your help.

We know that EDS and HSD affect people with all identities and we want your help in ensuring that we are properly representing YOU. Together, we can create a larger reach, training information, and accessible imagery that will further reduce misunderstanding of diagnostic criteria and delay to diagnosis.

To assist in clarification and boost representation, we are launching the Breaking Down Barriers: Representation in Medical Imagery. We invite you to submit photos of your EDS and HSD symptoms that potentially vary with skin tones, body types, and other unique characteristics of your EDS or HSD, and to share your story! www.ehlers-danlos.com/breaking-down-barriers/representation-... #EhlersDanlosSyndrome #hypermobilityspectrumdisorders #ChronicIllness

Post

No goal too small

"My job is to do what I can to take care of me. Today that meant taking a shower. It may seem small, but it was good enough for me.

Don’t worry about your goals. Don’t compare your goals. No goal is too small."

themighty.com/2017/03/achieving-goals-with-ehlers-danlos-syndrome #EhlersDanlosSyndrome #ChronicIllness #hypermobilityspectrumdisorder

2 comments
Post
See full photo

vEDS Virtual Conference July 30-31

Community and Healthcare Professionals Event July 30-31.

Join us for our EDS ECHO Summit Series: #VascularEDS (vEDS) virtual event, with leading expert presentations on care for individuals with #VEDS and comorbidities. CME/CE/CEU credits available: buff.ly/345QNxy

Post
See full photo

vEDS Virtual Conference

Community and Healthcare Professionals Event July 30-31.

Join us for our EDS ECHO Summit Series: #VascularEDS (vEDS) virtual event, with leading expert presentations on care for individuals with #VEDS and comorbidities. CME/CE/CEU credits available: buff.ly/345QNxy%3Ctopic%20id= " originalText="https://buff.ly/345QNxy#EhlersDanlosSyndrome ">

Post

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: youtu.be/cpsvbrK_1Fc #EhlersDanlosSyndrome #hypermobilityspectrumdisorder

Post

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." themighty.com/2017/03/hypermobile-ehlers-danlos-syndrome-pain-at-night
#HypermobileEDS #HEDS #EhlersDanlos #hypermobilityspectrumdisorder

7 comments
Post

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. themighty.com/2020/09/day-of-constant-pain #hypermobilityspectrumdisorder

Post

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: https://youtu.be/qwGcurcM9F0