bitingcat · @bitingcat
4 followers · 63 posts · Server hachyderm.io

@tomkindlon @longcovid @mecfs @spoonie Yup. Compared to my son (one of the really freaky Ehlers-Danlos zebras) I'm not *that* hypermobile. But, as I tell myriad niecelets and nephews, this hot mess is what you get when you keep sucking it up, pushing through the pain, and getting blown off by doctors for 50 years. + on top of , etc., and the torn tendons and ligaments show. 🎉🦄

#chronicfatiguesyndrome #LongCovid #ehlersdanlossyndrome

Last updated 1 year ago

Farrah Garland · @farrahgarland
24 followers · 27 posts · Server disabled.social

is fucking baller. I love it so much! As you probably know, I do a lot of artwork that features my own body & highlights my disability, whether it's using my mobility aids, or leaning into my weird hypermobility (thanks !).

I do this not only bc I LOVE making art, but bc we are under-represented in art & media, when we ARE represented it's often by abled folk vs disabled people, & there is still a whole lot of disability stigma floating around

#DisabilityPride #disabled #ehlersdanlossyndrome

Last updated 1 year ago

Aaron · @hosford42
594 followers · 4405 posts · Server techhub.social

@goodthinking @StillIRise1963 @OldAndCranky @vecrumba @unicorndeburgh I'm in my 40s and already cranky... And I'm definitely not loving it. Does your whole body permanently hurt from 40 on? Or am I special. Probably special... . Yay.

#ehlersdanlossyndrome

Last updated 1 year ago

Aaron · @hosford42
593 followers · 4366 posts · Server techhub.social

@ciechom @dramypsyd @GothAndy @actuallyautistic It's actually common for people with , , and other disorders. And is 7 times more likely for people with . My guess is that the association between autism and is due to their mutual comorbidity with EDS.

#ehlersdanlossyndrome #jointhypermobilitysyndrome #connectivetissue #autism #EDS #pots

Last updated 1 year ago

dystobot · @dystobot
5 followers · 7235 posts · Server med-mastodon.com

[Automatic repost twitter.com/dystobot/status/16]

RT @HeartBravoFl: I am sure is not helping any of this. I was so embarrassed. My daughter was yelling not to call ems this normal. My normal sucks.

#ehlersdanlossyndrome #neis #dystonia #trigeminalneuralgia #occipitalneurgia #hemifacialspasms

Last updated 1 year ago

New research suggests genetic identification for -- .

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 gives me great hope.

#EHDS #mthfr #hypermobileEhlersDanlosSyndrome #HSD #genetics #ehlersdanlossyndrome #chronicpain #myedschallenge #myhsdchallenge #togetherwedazzle #zebrastrong

Last updated 1 year ago

Tom Kindlon · @tomkindlon
569 followers · 948 posts · Server disabled.social

New:
Female reproductive health impacts of and associated illnesses including ME/#CFS, , and connective tissue disorders: a literature review

Free fulltext:
frontiersin.org/articles/10.33

@mecfs @longcovid

#LongCovid #pots #ehlersdanlossyndrome #eds #endometriosis #mecfs #myalgice #pwme #womenshealth #endo

Last updated 2 years ago

American Refugee · @Dmneverfails
16 followers · 393 posts · Server mstdn.science

RT @TheEDSociety
Raise Awareness on Social Media this May with '31 Days of EDS & HSD!' Use the 31 daily themes as prompts for your social media posts. Starts May 1st - Learn more! ehlers-danlos.com/may-awarenes
twitter.com/i/web/status/16519

#togetherwedazzle #ehlersdanlossyndrome #hypermobilityspectrumdisorder #myedschallenge

Last updated 2 years ago

UnCoveredMyths · @UnCoveredMyths
701 followers · 41 posts · Server writing.exchange

UnCoveredMyths is the home three authors.

Abby Brown writes and Fiction

Abagail Brown writes

Gail Brown writes , , and . Former Novels, Currently, .

I also enjoy and . I will occasionally mention when one of my books are free on Amazon.

I an , have , , , and . Due to EDS, I use a .

#powerchair #celiac #eds #ehlersdanlossyndrome #mcas #deafblind #disabled #reading #writing #shortstories #solarpunk #hopepunk #sciencefiction #survivorfiction #findingfamily #nonfiction

Last updated 2 years ago

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 and in today’s @Huffingtonpost. I hope it helps someone else find an answer and perhaps hope for the future.

huffpost.com/entry/broken-bone

#ehlersdanlos #hypermobility #ehlersdanlossyndrome #hypermobileEhlersDanlosSyndrome #chronicpain

Last updated 2 years ago

Camille (they/them) · @camille
104 followers · 384 posts · Server disabled.social

@disability folks with Ehlers-Danlos Syndrome do you find ice helpful for treating subluxation pain? I usually don’t use ice but don’t know what to do for a particularly bad shoulder subluxation that happened yesterday

#eds #ehlersdanlossyndrome #NEISvoid #subluxation

Last updated 2 years ago

American Refugee · @Dmneverfails
15 followers · 289 posts · Server mstdn.science

RT @TheEDSociety
"If it wasn’t for The Ehlers-Danlos Society, I would still feel scared, and alone, and still wouldn’t understand why I am the way I am." ehlers-danlos.com/story/lauren

#ehlersdanlossyndrome #pots #hypermobileehlersdanlossyndrome

Last updated 2 years ago

dystobot · @dystobot
6 followers · 4052 posts · Server med-mastodon.com
Lee :v_greyace: · @leetxdd
195 followers · 115 posts · Server lgbtqia.space

Just been to see the rheumatologist, and he's super pleased with my progress.

I'm off joint supports, and now am increasing medication, coming off caffeine, and doing even more exercise, to hopefully exhaust me into sleeping 😊

#ehlersdanlossyndrome #eds #hypermobilityspectrumdisorder #hypermobilesydnrome #chronicallyill

Last updated 2 years ago

Angie · @StrangerSights
137 followers · 333 posts · Server social.horrorhub.club

this book about a budding serial killer with

Another Elizabeth is such a fun, engaging read!

#currentlyreading #heds #womeninhorror #ehlersdanlossyndrome #serialkiller

Last updated 2 years ago

morgandawn · @morgandawn
322 followers · 591 posts · Server sfba.social

Millions have the same 'bendy body' disease as my daughter. Why isn't the medical profession paying more attention? | CNN

cnn.com/2022/12/24/health/hype

#ehlersdanlossyndrome #eds #hypermobility #disability

Last updated 2 years ago

Jemma Brown · @Jemmabrown
90 followers · 98 posts · Server disabled.social

Oh the joy of My called we both agree we think I’m developing arthritis in my ‘good knee’ I’m in my early 30’s x rays next but we are suspicious!

I’m not ready - like I knew it was in my future but I wasn’t expecting that future to be so soon.

#heds #gp #ehlersdanlossyndrome #arthritis

Last updated 2 years ago

UnCoveredMyths · @UnCoveredMyths
47 followers · 3 posts · Server autistics.life

I generally post about , , , , and .

Due to EDS, I use a .

I also enjoy and . I will occasionally mention when one of my books are free on Amazon. If you need a copy, please let me know.

I am , and write about .

Things I miss: Gardening, Sewing, Crafting, Crocheting, Cooking, Baking, Knitting, Walking, Hiking, Exploring.

Photos are rare, as words are easier to use to explain concepts.

#disability #mcas #ehlersdanlossyndrome #eds #celiac #powerchair #writing #reading #deafblind #accessibility

Last updated 2 years ago

Kathleen Burnard :BP_cuff: · @kburnard
300 followers · 491 posts · Server med-mastodon.com

2/2 Don’t say you’ll give them more lidocaine than is standard only to revoke that statement DURING the procedure. Learn the bare minimum about your patients’ medical conditions. If they send you a medical paper to back up their own history (esp. if they highlight one single page with relevant info so you don’t have to read the whole thing) because they already feel your disbelief, fucking read it.

#MedMastodon #ehlersdanlos #ehlersdanlossyndrome #anesthesia #Cervicalcancer

Last updated 2 years ago

Kathleen Burnard :BP_cuff: · @kburnard
300 followers · 490 posts · Server med-mastodon.com

1/2 Had the this morning and am having complicated feelings about it. I’m glad my partner was there. I didn’t advocate for myself particularly well, but it would have been way worse if he hadn’t been there. I don’t ever want to go back to that doctor again. If you’re reading this and are ever in control of anesthesia for patients, please believe them when they say they are resistant to local anesthetic.

#leep #MedMastodon #ehlersdanlos #ehlersdanlossyndrome #anesthesia #Cervicalcancer

Last updated 2 years ago