Why I Participate in Ehlers-Danlos Awareness Month

It happened the second Friday of May. I was fishing money out of my zipper pouch, purchased with gift card funds from the Ehlers-Danlos Society awareness month in 2021 proclaiming, “Weird Flex But Okay Ehlers-Danlos Syndrome,” and I was given an opportunity to explain my red shirt.

It just happened to be the Friday designated as vEDS awareness day. I was able to share with the cashier not only a giggle about the joke on my pouch (and I informed her it was from one of my favorite Zebra crafters, “Cripple Punk Designs“), but also had an opportunity to talk about vascular EDS and how dangerous it is.

Why is the awareness campaign around Ehlers-Danlos Syndromes so important?

Visibility. The more we are seen, the more younger people are heard and believed.

I can’t imagine what it would have felt like to be understood and believed when I was younger and tried to express the amount of pain I was in.

No one listened. On the outside I looked healthy. I worked as a dancer in my young twenties and had a body that vacillated between muscular and curvy and a bit more than curvy, once I hit my thirties.

No longer was I bullied for being too thin, now I had the challenge of my own internal fat phobia to deal with. I was now the shape I always had feared becoming.

In desperate attempts to lose weight to get symptoms under control, I lost over 70 pounds in 2019, only to discover my pain was worse when thin.

Chubby zebras not only exist, but make up a large percentage of those ignored by the medical profession. Without awareness campaigns, many people who don’t fit the stereotypes doctors think of, wouldn’t be seen at all.

By being part of campaigns to raise awareness, I am paving the way for those generations behind me to get increasingly appropriate, more informed and more compassionate healthcare.

Without visibility, the children of today face the same dim futures we’ve already put in our past. We have a responsibility to them.

As someone who has had the privilege to obtain a clinical diagnosis, I have a responsibility to tell my story of what I have been through and how I have been treated.

Awareness campaigns are one of the best ways to make certain that the care of the younger generation improves.