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We Are in the Midst of an Ehlers-Danlos Revolution

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When I fell ill two years ago, I was scared. There was definite relief as it was an answer to so many lingering questions in my life, but when I was diagnosed, there wasn’t a ton of literature available on my illness. There was a medical journal, sure, and a few articles, but awareness was extremely limited.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Six months after my diagnosis, I decided I had learned enough from my illnesses to write about my experiences. Starting with a simple article about the positives that stemmed from my Ehlers-Danlos syndrome, I began to chronicle my journey on The Mighty.

When I began, I believe I was the fourth or fifth article published on Ehlers-Danlos syndrome on The Mighty. It seemed like I was unique in sharing my journey as so few had bothered to in the past. Then, something amazing happened — what I would consider a revolution.

As I began to chronicle my journey, I noticed that other writers had begun to do the same around the time that I started. Now, if you look up the number of stories chronicling Ehlers-Danlos syndrome on The Mighty, the tally is over 450 stories. In the year and a half since I began writing, over 450 stories have been written on my illness; that is a crazy high number.

That number does not even begin to touch on the awareness that this illness has received over the past year. From model Sara Geurts being noticed by mainstream media for her unique beauty to Mandy Harvey’s stint on “America’s Got Talent” to hundreds of other stories to reach the news, Ehlers-Danlos syndrome has exploded in the media.

Not only has the amount of stories exponentially grown, so has the research. New diagnostic criteria, 10+ papers on separate bodily functions that EDS affects and countless other ongoing studies are proof that Ehlers-Danlos is finally receiving not only the media attention, but the research that it deserves.

I feel a need to say thank you today to everyone who has made this revolution possible. From the big name advocates like Mandy Harvey and Sara Geurts to everyday people like my spoonie friends who help to get me through the day, we made this happen. Every support group joined, article written and post shared brought us to this point.

Do not get me wrong, EDS research and education still has a long way to go. There is still a high prevalence of doctors having no knowledge of this disease, and there is still no cure. Nonetheless, the progress I have seen in the last two years since my diagnosis is incredible.

Now, if a newly diagnosed patient Googled Ehlers-Danlos syndrome, I hope they would feel less alone. If a newly diagnosed patient Googled EDS, they would see hundreds of stories written by people just like them. If a newly diagnosed patients Googled EDS, they would find research on comorbidities and how this disease will affect their daily lives. Most importantly, they would find support and a community that was all made possible by this mini-revolution.

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Getty Images by solar22

Originally published: February 19, 2018
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