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!
If you have any further questions, do contact our Diversity & Inclusion Coordinator Michelle Jalali.