My EDS challenge Day 26- My wishes for future diagnosis of EDS in Life with Ehlers Danlos

  • May 26, 2022, 10:45 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 26- My wishes for future diagnosis of EDS

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My wish for the future is that everyone has access to affordable genetic testing AND genetic counseling. Everyone deserves a choice to know, or not know, what their genome has in store for them. Then they can make decisions for what that means for them.

Doctors need more than just one slide of education on EDS. They need to be educated that it is much more common than they think it is, and they should be diagnosing more EDS patients and not shying away from this diagnosis. We need to make assessments for EDS more common among all types of specialists.

Once we get a better handle on naming more genetic types of EDS, we should be offering these tests on newborn screening panels. Every person deserves to prepare for what their life will look like with EDS. They deserve access to knowledge and not spending decades and decades wondering what is wrong with them, thinking they are crazy, and spending thousands and thousands out of pocket for un-necessary testing.

Because in order to have treatments available, we need to first have the better pathway to naming what we are dealing with and faster diagnosis.


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