The realities of life with Ehlers-Danlos Syndrome | oneedsvoice

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The realities of life with Ehlers-Danlos Syndrome


It wasn’t that long ago, about four years, that I found out I have a mood disorder. The medications, they said, could affect my thyroid and kidneys. I was also told that due to autoimmune disease my kidneys and other organs, such as my heart, could be affected. Another troubling diagnosis came a few months later. I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS).

Ehlers-Danlos syndrome has been, to this day, the hardest of all my diagnoses for me to deal with. Why? Because I was told it could affect my heart, but not once did my doctor, who specializes in EDS, tell me about everything else it can do to my body. Perhaps this is because he didn’t know, or may be because he was focused on my other symptoms. He also told me to wait to see a geneticist until I’m ready to have children. I’m still not ready for that, nor do I think I’ll ever be ready.