Awareness is what matters.

Posted March 11, 2021

Jamie smiles in her wheelchair with arms outstretched

The unknown

I was originally diagnosed over five years ago with hypermobile Ehlers-Danlos syndrome (hEDS), by a medical professional who decided I was not worth their time.

I was not informed, not treated, not directed to any other medical professionals for further help with my comorbidities and other related symptoms.

I was walking about the unknown, continuing to fail, continuing to fall…all on my own with no help, no idea what I was supposed to do, or if I was supposed to even do anything at all in the first place.

So I continued on about my life as it was. Constant GI problems, constant dislocations, bruising, ER visits, infections, allergic reactions, random rash or hive breakouts, and flare-ups, severe daily pain and migraines, surgery after surgery wondering why my body was falling apart or if I was crazy. I have to appreciate my primary care physician for not giving up on me and always taking care of me despite the numerous visits in a single week. I would’ve thought they’d give up on me too, but not all physicians are the same. Some are superheroes. Here is where my story changes.

Second opinion

I received a referral for a new specialist and my life at this point began to change. Diagnosed again with hEDS as well as with Lupus and some other comorbidities. “Okay, so wait a moment”, I thought, “I do actually have some sort of autoimmune disease and I have had it this whole time?” This medical professional immediately took the time to explain EVERYTHING.

I received pamphlets, articles, he directed me to The Ehlers-Danlos Society website, mentioned finding and joining support groups online for more info, support, and so on. I was put on medication to help with some of my symptoms which has helped quite a bit. I received referrals immediately out to other specialists to get help for my other comorbidities and symptoms so that I could begin living my life better. The goal is to have a better quality of life! This specialist was willing to help me achieve that!

Since then I have had my ups and my downs with physicians. I have moved states and there are always struggles with finding the right physicians. Even if a physician does not understand or know anything about Ehlers-Danlos syndromes, are they willing to do the research? That is what matters. Awareness. Those that are willing take a moment to understand, to become aware by just reading one small article or listening to a friend or person diagnosed with EDS and then passing that information onto another.

Making a difference, together

Knowing about the Ehlers-Danlos syndromes can help bring support to not just those diagnosed with EDS but also to their families and caregivers. Correct diagnosis and knowing sooner than later can help prevent (not all but a little) stress on families, friends, and the one diagnosed, financial distress, and even death. Awareness is key. If I had known sooner a lot would have been different for me in many ways and all because even I was unaware.

“I joined the May Awareness Month Challenge to spread awareness and raise funds to support The Ehlers-Danlos Society by participating in the #myEDSchallenge and raised $60. I hope to help others become more aware and offer support in return to those that have offered me support. Thank you for your support!” @ZebraJemma

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