MY EDS Challenge Day 8- Awareness Share in Hypermobile Life

  • May 8, 2022, 12:52 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.

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Day 8- Awareness Share

Some more facts about Ehlers Danlos, and Hypermobility spectrum disorder. Since there is no genetic testing for one type (hEDS), diagnosis is done by a physical assessment and a criteria checklist that is on the Ehlers Danlos society website. Hypermobility assessment called the Beighton Score is only a portion of the criteria. Any doctor can use this guide to diagnose a patient. Sometimes you will get lucky and have a specialist or even a primary doctor who recognizes Ehlers Danlos. Physical therapists who work with hypermobility a lot more than doctors do usually are the ones who recognize it. Some folks say rheumatologists can recognize it but not always. You will be referred to a geneticist to rule out the other types of EDS. But seeing a geneticist can take years sometimes. The pathway to diagnosis can sometimes take a lifetime, but the average is ten years. If you are not a tall female who has frequent joint dislocations and is exceptionally flexible, a doctor might say that you cant possibly have EDS or HSD.

For the hEDS diagnostic checklist.

Last updated May 08, 2022

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