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The Letter I Sent the Doctor Who Dismissed My Ehlers-Danlos Syndrome

key information

source: The Mighty

year: 2016

authors: Melody Dobbins


Firstly, I want to thank you so much for your time today, especially in figuring out the Midrin mystery. I appreciate it. I also wanted to express some concerns I had, in hopes that it may help with any other EDS patients that you encounter. EDS is a tricky condition, and even my primary care physician said I will probably know more about it than most doctors I encounter.

I came to you for help with the understanding and treatment of neuromuscular pain, dysautonomia symptoms, as well as migraines and PLMS. You immediately told me that you “don’t treat Ehlers-Danlos syndrome.” Well, that’s part of the problem with patients like myself. We have a syndrome, and a nice collection of comorbidities that we rely on various specialists to help us manage. No one treats EDS, they treat the symptoms and the other conditions that go hand in hand with a systemic connective tissue disorder.

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