Part 3 of Medical PTSD – EDS & MG

I have read so many horror tales in the Ehlers Danlos community. I attribute this problem to several factors. We spend so much time seeking diagnosis from multiple specialities. So many of us have medical PTSD - we are so used to not being believed. We are so complicated and rarely present the same as others with EDS since there are so many varieties. We really are zebras! New varieties…

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Aging and EDS

The last 5 years have aged me. You can now see it in my face. Many Ehlers-Danlos patients look way younger than their years and I was no exception. At 64 I could have passed for 55 easily. I have proof – a studio portrait taken for a book blurb in December of 2015. A few years later I had undergone five surgeries in 18 months and thought the death-dying deeds might be the cause of the dramatic change.

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The Twilight of Diagnosis

Twilight – that time between the clarity of day and the murky darkness of night. When I got diagnosed with Ehlers-Danlos Syndrome (EDS) at 55, I was told by the doc that it was untreatable and uncureable and to just go home and forget about it. Once so much came online about it, I was able to get further but except for odd surgeries, cysts and hernias, it all seem to just go along without massive problems.

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