@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. #chronicfatiguesyndrome + #LongCovid on top of #ehlersdanlossyndrome , etc., and the torn tendons and ligaments show. 🎉🦄

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

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

@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... #EhlersDanlosSyndrome. Yay.

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

[Automatic repost https://twitter.com/dystobot/status/1659643869112287233]

RT @HeartBravoFl: I am sure #EhlersDanlosSyndrome is not helping any of this. I was so embarrassed. My daughter was yelling not to call ems this normal. My normal sucks.#NEIS #Dystonia #Trigeminalneuralgia #OccipitalNeurgia #hemifacialspasms

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

https://scitechdaily.com/bending-over-backwards-vitamin-deficiencys-surprising-role-in-double-jointedness-and-eds/

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

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

Free fulltext:
https://www.frontiersin.org/articles/10.3389/fresc.2023.1122673/full

#EhlersDanlosSyndrome #EDS #endometriosis #MEcfs #MyalgicE #PwME #WomensHealth #Endo @mecfs @longcovid

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! https://www.ehlers-danlos.com/may-awareness/social-media-challenge/
#TogetherWeDazzle #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #MyEDSChallenge… https://twitter.com/i/web/status/1651974027030716416

UnCoveredMyths is the home three authors.

Abby Brown writes #NonFiction and #FindingFamily Fiction

Abagail Brown writes #SurvivorFiction

Gail Brown writes #ScienceFiction, #HopePunk, and #SolarPunk. Former Novels, Currently, #ShortStories.

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

I an #Disabled, #DeafBlind have #MCAS, #EhlersDanlosSyndrome, #EDS, and #Celiac. Due to EDS, I use a #PowerChair.

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.

https://www.huffpost.com/entry/broken-bones-ehlers-danlos-syndrome_n_644052d2e4b039ec4e7c66c2

#EhlersDanlosSyndrome #HypermobileEhlersDanlosSyndrome #ChronicPain

@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

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." https://www.ehlers-danlos.com/story/lauren-b-2/ #EhlersDanlosSyndrome #POTS #HypermobileEhlersDanlosSyndrome

[Automatic repost https://twitter.com/dystobot/status/1638601579627421702]

RT @SmartCrutchUSA: #MarchMadness through 3/31/23, free crutch bag w every #smartcrutch to keep your remote close.

#smartcrutch #ehlersdanlossyndrome #potssyndrome #mctd #crps #RSD #rhuematoidarthritis #arthritis #CFS #functionalneurologicaldisorder #dystonia #veterans #multiplesclerosis #MS https://t.co/WORrenr5Bd

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

#currentlyReading this book about a budding serial killer with #hEDS

Another Elizabeth is such a fun, engaging read!

#womeninhorror #EhlersDanlosSyndrome #serialkiller

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

#EhlersDanlosSyndrome #EDS #Hypermobility #Disability

https://www.cnn.com/2022/12/24/health/hypermobile-ehlers-danlos-syndrome-health-hnk-spc-dst-intl/index.html

Oh the joy of #hEDS My #GP 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.

#EhlersDanlosSyndrome #Arthritis

I generally post about #Disability, #MCAS, #EhlersDanlosSyndrome, #EDS, and #Celiac.

Due to EDS, I use a #PowerChair.

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

I am #DeafBlind, and write about #Accessibility.

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.

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

1/2 Had the #LEEP 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.

#MedMastodon #EhlersDanlos #EhlersDanlosSyndrome #Anesthesia #CervicalCancer