Published: 13/12/2018

Ehlers-Danlos doesn’t have me

by Reanna M.

My story starts like so many of us zebras. It took nearly ten years to reach my diagnosis. Ten years of pain, misdiagnosis and frustration.

I first heard the term Ehlers-Danlos Syndrome in 2007 when my primary care doctor mentioned it as a cause of my seemingly-unrelated symptoms. I had always been slightly unhealthy, but after acare accident in 2002, I never fully recovered and my health continued to decline. When my doctor mentioned it, I thought to myself, “No, I cannot have this, my skin is not very stretchy”. I was young and was more concerned with enjoying my youth than accepting a diagnosis of an incurable illness.

I was sent to rheumatology and there the doctor diagnosed me with seronegative Rheumatoid Arthritis. Looking back, I never really fit into that category. For eight years I took medication to combat this illness that I did not have and the effects of these drugs made me so much sicker. Eventually, I decided to go off all these medications slowly and to find new doctors. I was not getting better, I was getting progressively worse.

Every month or so, I would dislocate my ankle for no apparent reason and be unable to walk. I would break out in hives and my face would swell. I had terrible migraines and pain in my joints. Everything hurt all the time and I was beginning to think that I would never figure out what was wrong with me. I was told that all of my symptoms stemmed from emotional trauma and all I needed was psychiatric care. Can you imagine? My ankle dislocates because of my emotional trauma?

I was stunned that the medical community treated patients like this and set out on my own mission to find answers. All this time, I never thought about what that doctor said ten years ago. One of my old friends was diagnosed and frequently posted awareness stuff on facebook. She kept up with some of the things that were going on in my life, like surgeries and procedures. She mentioned that maybe I should look into the criteria. After doing weeks of research and reading about EDS, I finally felt like I could put the puzzle pieces together.

I made the appointment with my primary care doctor and was extremely nervous because I had been treated so poorly in the past. I remember sitting in the waiting room with my palms sweating. When it was time to go back and talk with her, my fears melted away with her knowledge of the condition. She agreed with me! She sent me to several specialists and all of them confirmed that I indeed had hypermobile Ehlers-Danlos syndrome. I was also diagnosed the next month with Chiari malformation and dysautonomia.

There is a special type of relief that washes over you when you are diagnosed with something that is incurable, after years of being dismissed. So many thoughts ran through my head, and still do. I have two children that are showing signs and that is heartbreaking. I also know that the reason I fight for awareness is for THEM.

Even though my illness has progressed to the point of not being able to work or go out much, I am very involved in awareness projects. I work with the Dysautonomia Support Network mentoring writers and I write for DINET newsletter. I am a contributor for The Mighty and have been able to touch the hearts of others suffering through my writing. I get to work with the Chiari and Syringomyelia Foundation chairing our local walk in 2018 with a fellow zebra and was a big part of the walk in 2017.

Being able to help others who are struggling in their journey has been a bright light in a dark tunnel. Although I may have Ehlers-Danlos, it does not have me.



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