Ehlers-Danlos Month

Happy May, fellow Zebras! Feeling stretchy? LOL, in all seriousness, though, I do wish to point out that it is OUR month, to celebrate our hypermobility, to spread awareness of our disease, and to advocate (and self-advocate!) for our rights to diagnosis, equal care, and consistency of health care, instead of the mire many of us live, in regard to healthcare.

I do like the new classification table that the EDS has put forth, mainly because it includes us “older folk” in the diagnostics. I USED TO be able to do many of the contortionist tricks that the younger folk have the market on (Reverse namaste, anyone??)…before my spine was fused, before severe degenerative joint, and degenerative disk disease set in. I STILL am a zebra, an Ehlers-Danlos patient, but more at the other end of the life spectrum and more at the other end of widespread stretchiness. I still have the facial characteristics, the soft, doughy skin, and the youthful look; however, I also have the less-glamourous features, such as multi-organ prolapse, megacolon, gastroparesis, and frequent dislocations and subluxations.

It is my hope that, once again, my fellow Zebras will help me “get out the word” to all: family, friends, and healthcare providers most of all. EDS is a REAL malady, it’s not fun and games and parlor tricks. It causes real pain for most of us, ending in disability for many. If you do not know about it, please look it up: Ehlers-Danlos Syndrome. Thanks!

PFJ

 

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