What does success look like? The EDS Registry was created to bring awareness to our numbers, and to facilitate connections for support. Ehlers Danlos Syndrome is not easy to see. To be visible, we have to be very open about our condition (even if people think we are 'whiners'), or we have to accept that when we 'look' healthy, we will struggle to access services or aids that we require. No one is too young for bone shattering pain. No one is too pretty to be sick. Ehlers-Danlos Syndrome doesn't discriminate.
We don't have many way to know how successful the Registry has been at helping people make connections so far, but we hope that some have found a friend through the site. if you have found support through the Registry, and are willing to tell your story, please submit it (and a photo if you would share it). With permission, we would like to publish these photos & stories on the Registry site. Will you show us what success looks like?
Send us your success story at firstname.lastname@example.org