Many around the world face a diagnostic odyssey: years, sometimes lifetimes, fighting for recognition, diagnosis, and care. The Ehlers-Danlos Society is working towards a time when geography and wealth no longer determine your quality of life.
Education is needed to advance early diagnosis and intervention—and post-diagnosis, patients urgently need support and guidance. We want to give hope to all those living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders. To do this effectively, we need change.
Many face barriers to diagnosis and care: not being believed, denied access to treatment, told they are too young or too old to be dealing with the symptoms they have. There are many different barriers that our community face globally, and in 2020 we want to work together to break down these barriers, and to open up the conversation around what our community is experiencing.
Breaking Down Barriers Coalition
Disparities in healthcare are very real. We do not accept inequality or inequity, and we continue to strive in our mission to give hope to and improve the lives of people affected by EDS and HSD. We recognize our community’s experiences of inequality when it comes to race, gender, sexuality, age, body shape, mental health, disability, and economic situation, and want to use our platforms to highlight these narratives.
We are developing a Breaking Down Barriers Coalition, bringing together representation from across our community that represents different races, countries, genders, sexualities, age groups, body types, disabilities, types of EDS and HSD, and all those who feel that they do not have the care they need because of a barrier. We want to be led by the community on what we can do to progress change, to develop resources, programs, and research. The Coalition will address inequalities, and help inform Society programming and advocacy efforts.
Initially, we are looking at the racial bias within the research literature. Going forward, we will work with the coalition and researchers to formulate inclusive research priorities. We ask that if you feel you are willing to share your experiences, and the barriers that you have faced in your EDS and HSD journey, and would like to be an advocate for change, that you take the time to complete our Breaking Down Barriers Coalition Application Form. We are listening to the passion and desire for change in our community and believe that this Coalition can start the discussions needed to pave the way for better access to care for all. We will be reaching out to partner with other organizations to learn from the work they have done in breaking down barriers to progress change.
Click here to view the Terms and Conditions for the Breaking Down Barriers Coalition.
We want to hear from you, we want to share your voice. Tell us what barriers you have faced along your diagnosis journey, and what barriers you continue to face when trying to access treatment, healthcare, and recognition. Share your story, and download the Breaking Down Barriers poster and share on social media with the hashtag #BreakingDownBarriers