#hypermobileEhlersDanlosSyndrome

2025-11-30

Diagnosis: Hypermobile Ehlers-Danlos Syndrome

After self-diagnosing, I got an official diagnosis. The victory of the official diagnosis was upstaged by the foot trauma two days previously, which I now know is a broken bone. However, at lest it’s in the same limb as all my other orthopedic trauma and severe arthritis. That’s really my saving grace right now — it’s a familiar injury. Adding another new mystery set of symptoms would be less welcome than rehatching an old burden.

Anyway, back to the art. I love some of the light interactive properties here that are hard to capture in a scan so:

 

Reflective properties close up, gold paint in the eyes, green metallic reflection for the dark around and in the eyes. The shimmer (ultra fine glittering particles) in the green ink are vibrant blue, and in the blue zebra stripes are color shifting, right now a rose.

Metallic version of the hardware in my leg — I looked at my own x-rays for reference!

Final close up.

https://www.illmarks.com/diagnosis-hypermobile-ehlers-danlos-syndrome/

#art #bodyHorror #bodyMapping #chronicIllness #connectivetissue #connectivetissuedisease #eds #ehlersDanlosSyndrome #ehlersdanlossyndrome #heds #hsd #hypermobile #hypermobileEhlersDanlosSyndrome #hypermobileehlersdanlossyndrome #hypermobility #hypermobilitySpectrum #hypermobilityspectrum #hypermobilityspectrumdisorder #longCovid #longcovid #medicalArt #MillionsMissing #pwLC #pwme

the figure in the manila bookmark has iridescent blue zebra stripes, which like a real zebra are smaller and tighter on the limbs and larger on the torso. Within the zebra's white spaces are green ink with blue sparkles, representing points of injury or trauma which have healed 'imperfectly' or had lasting trauma due to the connective tissue disorder -- the left (mirrored) leg, right inner knee, inner thighs and outer hips, some on the hands/fingers, and a splotch on the chest. The bottom leg which is very dark green has golden reconstructive hardware drawn on

Hey. Help us pay for my new wheelchair? I'm desperately hoping the issues with my current chair are that it's old and battered and possibly needs more in repairs than would be worth it (it's better than NOT having one, don't get me wrong...). But $1,100 (rounded slightly up) is a dear price even if cheaper than we'd ever get anything custom.

We're hoping to pay it off in chunks, since we used a credit card, but. The assurance of *having* the money to pay it off would be awesome - and y'all can say you helped buy my chair! Win/win!

Current goal is at $50/$100

(Unless that's changed literally while I've been typing 🤣)

My cashapp is $Inoru, spouse's CashApp is $ceahhettan and his
Venmo is @/californiummm; ask them for paypal/zelle. Comment wheelchair or a Blue wheelchair emoji with specifically-for-this donations! Any amount helps and I/we appreciate!

<*wiggles in New Wheelchair excitement*>

#crowdfund #crowdfunding #transcrowdfund #transcrowdfunding #disabledcrowdfund #disabledcrowdfunding #deafcrowdfund #deafcrowdfunding #helpfolkslive #HelpFolksLive2025 #mutualaid #MutualAidRequest #moneyhelp #ambulatorywheelchairuser #hEDS #hypermobility #hypermobileEhlersDanlosSyndrome #wheelchairuser #powerchair #wheelchaircrowdfunding #powerchaircrowdfunding #IsThisEnoughHashtags #hashtag

via @camilla

kolektiva.social/@camilla/1137

𝓖𝓲𝓪 𝓜𝓸𝓻𝓪 (she/her)giamora@mastodon.green
2023-05-02

New research suggests genetic identification for #eHDS -- #MTHFR.

scitechdaily.com/bending-over-

I have known since 2008 that I have this mutation because it caused such difficulty in my sister's pregnancy. To know that this may be the new diagnostic tool for #HypermobileEhlersDanlosSyndrome gives me great hope.

#HSD #Genetics #EhlersDanlosSyndrome #ChronicPain #MyEDSChallenge #MyHSDChallenge #TogetherWeDazzle #ZebraStrong

𝓖𝓲𝓪 𝓜𝓸𝓻𝓪 (she/her)giamora@mastodon.green
2023-04-20

I’ve diligently worked my entire life to cultivate the grace with which I was not born. Only in granting myself compassion did I truly find it.

Learn more about my journey with #EhlersDanlos and #hypermobility in today’s @Huffingtonpost. I hope it helps someone else find an answer and perhaps hope for the future.

huffpost.com/entry/broken-bone

#EhlersDanlosSyndrome #HypermobileEhlersDanlosSyndrome #ChronicPain #hEDS #BrokenBones #BrokenAnkle #BrokenJaw

2022-11-09

Couldn't survive the pain of #AutoimmuneArthritis and #hypermobileEhlersDanlosSyndrome (hEDS) without #CBD balm but by God it makes my clothes stink. Seems to cling to some materials esp jersey cotton.

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