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 faces globally, and we want to work together to break down these barriers and to open up the conversation around what our community is experiencing.