MY EDS Challenge Day 17- Share a selfie in Life with Ehlers Danlos

  • May 17, 2022, 4:31 p.m.
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I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.

Day 17- Share a selfie

Today’s late post brought to you by: Indianapolis, IN and the EDS center run by Dr. Francomano. She is one of the top geneticists working on the Ehlers Danlos syndromes. I had such a pleasure meeting with her today and I realize how privileged I am to have had the opportunity. Many people in the EDS community know her name. I waited 3 months just to get scheduled and 2 years for the appointment. My biggest fear today going into this appt was, I am way out of my league here. I am not a severe enough case. And that might have been kind of true. My hypermobility presents a bit differently than others. My quality of life has significantly changed but I can still do some things.

Today was finally validation for me. After a lifetime of issues, 8 years of worsening issues, and 2 years learning what Ehlers Danlos was, it is on paper. I don’t qualify for an official hEDS diagnosis due to being one point off from the criteria BUT.... my connective tissues are not… within the normal range.

I also got a few more surprises. There are 2 other genetic conditions I most likely have, waiting for testing to confirm. Stay tuned to this shit show, that is Dylannes genome. 🙃🙃

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hawkmoon269 May 20, 2022

Pretty shirt!!!

AnOrangeZebra hawkmoon269 ⋅ May 20, 2022

<3

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