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. 🙃🙃