My EDS challenge Day 27- My wishes for research on EDS in Hypermobile Life

  • May 27, 2022, 9:17 a.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 27- My wishes for research on EDS

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First and foremost for EDS research, we need to figure out more genetic types of EDS. Its my opinion that there is not just one gene for hEDS and HSD, there will be so many more discoveries and types added. Then we need to study the biology of what those genes code for and how it effects connective tissue.

We need more labs specifically dedicated to EDS, and those labs need to collaborate with eachoher and not worry about beating eachother to discovering stuff and other drama associated. This research will help all of us and educate so many people.

Then, as we progress on genetics we can do more studies on correlations between EDS and comorbidities as well as other things like hormones, environment, what role does the immune system play, etc. And then we can research treatment options. Will it be a hormonal treatment? Can it possibly be a new tissue enhancement? Treatments for the nervous system? Improvement of stem cells and gene editing? Who knows, the possibilities are endless.

Lastly, there are so many variants of unknown significances out there that need to be studied and determined if any of this massive population of folks with hEDS and or HSD have similarities going on. More people donating their genome information equals more studies!!!


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