The month of May is Ehlers-Danlos Syndrome Awareness Month. What is Ehlers-Danlos Syndrome and why should you care? Ehlers-Danlos Syndrome, also known as EDS, is a group of 13 connective tissue disorders that primarily affect the quality in the production of collagen. Since collagen helps make up many parts and systems of the body - like skin, muscles, organs, ligaments, veins & arteries, etc., EDS can affect any system and all systems of the body. It's like building a house of cardboard and expecting it to work like wood, but also the table is cardboard, and so is the bed, and the plates, and your shoes. There are currently 13 known subtypes of EDS, of which I was clinically diagnosed with the Hypermobile type. The only type with unknown genetic markers, and the most common subtype of EDS. There is no cure for hEDS, or any form of EDS for that matter. I was not tested for the classic-like subtype, the tn xb gene, as that is apparently harder to test for. At this time, research statistics of the Ehlers-Danlos syndromes show the total prevalence as 1 in 2,500 to 1 in 5,000 people. Recent clinical experience suggests that Ehlers-Danlos syndrome may be more common. The conditions are known to affect both males and females of all racial and ethnic backgrounds. These numbers are just speculative as we don't know the true prevalence. I have spent the last 13 years looking for answers to health issues I have been having. On average, it takes 10 to 20 years for an EDS diagnosis to be confirmed from the onset of symptoms. Most people, without first degree relatives who are already diagnosed, don't get their diagnosis until around age 40. While my case is relatively mild compared to many people I have talked to, I still have daily pain. I have craniocervical instability, occipital neuralgia, eustachian tube dysfunction, orthostatic intolerance -being tested for Postural Orthostatic Tachycardia Syndrome (POTS) so I get dizzy and almost (sometimes completely) faint when I change positions/stand up. Most mornings I have to reset my hips, shoulders, and neck. #hEDSstrong #EDSstrong #EDSAwarenessMonth #PosturalOrthostaticTachycardiaSyndrome #InvisibleIllness (at Tacoma, Washington) https://www.instagram.com/p/CcvcUcoJx_7/?igshid=NGJjMDIxMWI=
