BangTheDrumEhlersDanlos 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @EhlersAintEasy

HEDS. Account to learn and share about hEDS + comorbidities. Grateful to find others. CSF leak?+ mast cell instability. Swears a lot due to arsholery. Scotland Joined June 2010

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13K

BangTheDrumEhlersDanlos 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @EhlersAintEasy

2 months ago

Head is playing up again, terrible pain when standing or sitting or lifting. Everything too bright, too loud, and phantom smell is back 😬

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BangTheDrumEhlersDanlos 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @EhlersAintEasy

2 months ago

My nice is having flare ups on her legs and back. Her face and chest gets red/hot/blotchy too. She feels very run down, mouth ulcers and breaking nails. What does everyone think? I see so much of my MCAS symptoms but I'm only coming from my perspective. She's very stressed.

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BangTheDrumEhlersDanlos 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @EhlersAintEasy

3 months ago

The deep joy of having built up enough strength and stability to punch the ever-living shit out of gym equipment when your ex is a massively disturbing arsehole is unmatched. F*cking atrocious subhuman w*nker. I hope he gets frostbite on his bits and bobs. #manifesting

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BangTheDrumEhlersDanlos 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @EhlersAintEasy

4 months ago

An interesting listen for those of us who lift or want to lift 💪 bullhorn.fm/bendy-and-stro…

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BangTheDrumEhlersDanlos 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @EhlersAintEasy

5 months ago

'Long Covid triggered our MCAS, but doctors didn't believe us' bbc.co.uk/news/uk-englan…

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Emma Reinhold @DrEReinhold

5 months ago

Putting on my outfit to visit UK Parliament to brief MPs and Lords on #EDS/#HSD followed by a visit to @downingstreet to hand in the @ehlersdanlosuk petition with 28,700 signatures. We're calling for @CommonsHealth to hold an enquiry into our lack of access to care or diagnosis.

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BangTheDrumEhlersDanlos 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @EhlersAintEasy

6 months ago

instagram.com/reel/CzS66sUMq…

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BangTheDrumEhlersDanlos 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @EhlersAintEasy

7 months ago

So I've figured out that best way for me to calm my nervous system is to lift heavy weights. Someone just pissed me right off, plus I was splotchy and overwrought from socialising, so went to the spare room and deadlifted heavy for a while. Back to calm! Bloody humans 😆

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BangTheDrumEhlersDanlos 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @EhlersAintEasy

9 months ago

So... someone I know ambushed me with a faith healer today. In my house. Nnnngggghhhhh.

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BangTheDrumEhlersDanlos 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @EhlersAintEasy

9 months ago

Loving #TheNicotineTest So much buzzy energy. Learning to make cakes!

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BangTheDrumEhlersDanlos 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @EhlersAintEasy

9 months ago

Has anyone got any recommendations for a rolling pin that doesn't hurt hands or wrists? Many thanks!

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BangTheDrumEhlersDanlos 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @EhlersAintEasy

10 months ago

I just did pretty much all of this to myself, and it took me a few days to piece it all together. Yet again. I should recognise it by now. One would think 🤷‍♀️ If I'm itchy, acting up and being a shit, this is the culprit.

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BangTheDrumEhlersDanlos 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @EhlersAintEasy

10 months ago

(Not me) This HAS to be EDS, surely? Skin snaps back to normal straight away. Age 35.

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BangTheDrumEhlersDanlos 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @EhlersAintEasy

11 months ago

Getting some help with the housework today from Russell Crow.

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BangTheDrumEhlersDanlos 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @EhlersAintEasy

11 months ago

I never understood the whole exercise high thing until now, and never thought I would until: Kettlebell swings. Wtf? What is this sorcery?

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BangTheDrumEhlersDanlos 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @EhlersAintEasy

11 months ago

If hEDS follows the pattern of 'hypermobility phase, pain phase and stiffness phase' - is the stiffness phase forever or is there some other state after? Do we just stiffen up and that's that?

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BangTheDrumEhlersDanlos 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @EhlersAintEasy

12 months ago

Anyone else's elbow sublux when walking? Bloody gravity.

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BangTheDrumEhlersDanlos 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @EhlersAintEasy

12 months ago

I'm sure we are the people who keep Hobbycraft open.

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Carl @HistoryBoomer

12 months ago

Do not go gentle into that good night,

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MQ @MQmentalhealth

12 months ago

Check out MQ researcher Dr Jess Eccles AKA @BendyBrain on @E4Tweets this evening at 9pm. This documentary follows @SamThompsonUK as he explores his ADHD diagnosis, how this neurodivergence presents in different people & how medication might help. #WithoutResearchItsJustGuesswork

BSMS @BSMSMedSchool

12 months ago

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collagen machine brok.. @chronicallybeee

15K Followers 4K Following enbrel slut | she/they | #FreePalestine | https://t.co/hFC0B2O8QQ

Candace D. @DiaryofaSickGrl

12K Followers 1K Following Wife. Mother. Dog mom. Chronic illness advocate. 🥄♥️ #hEDS, #MCAS, #POTS, #foodallergies, #cornallergy, etc.

Internationally recognised EDS/HSD Movement Therapist. 15 yrs EDS experience. Author, Speaker, Educator. IMM, The Zebra Club & Moovlite. MSc Pain Mgt

Jeannie Di Bon @jdibon

10K Followers 1K Following Internationally recognised EDS/HSD Movement Therapist. 15 yrs EDS experience. Author, Speaker, Educator. IMM, The Zebra Club & Moovlite. MSc Pain Mgt

Director of Sci & Med Outreach, #MEAction
Stanford Med
#ME, #EDS, #POTS, #LongCOVID
Views my own
exceedhergrasp1@bsky.social

It'sME(Jaime) @exceedhergrasp1

20K Followers 5K Following Director of Sci & Med Outreach, #MEAction Stanford Med #ME, #EDS, #POTS, #LongCOVID Views my own [email protected]

Oh, That's Why I'm So Tired! Ehlers-Danlos Syndrome survivor & writer. She/her. Co-author #EDSToolkit for doctors. EDS / HSD isn't rare, just rarely dxed. PDX.

Oh TWIST! @H2OhTwist

9K Followers 4K Following Oh, That's Why I'm So Tired! Ehlers-Danlos Syndrome survivor & writer. She/her. Co-author #EDSToolkit for doctors. EDS / HSD isn't rare, just rarely dxed. PDX.

Joanna (she/her) 28 Queen of Allergies 👑 MCAS, POTS, EDS & CCI💛 Autistic, ADHD, OCD. PMDD. Check out @allergybeauty for allergy friendly products!

Joanna No Banana @JoannaNoBanana

31K Followers 21K Following Joanna (she/her) 28 Queen of Allergies 👑 MCAS, POTS, EDS & CCI💛 Autistic, ADHD, OCD. PMDD. Check out @allergybeauty for allergy friendly products!

Digital journalism. Design, news/book edits, linguistics, data, tech. Medical + academic research. Disability in news consults. @the_dailydis. #CripTheVote

Emily Johnson (is on .. @emily_rj

8K Followers 6K Following Digital journalism. Design, news/book edits, linguistics, data, tech. Medical + academic research. Disability in news consults. @the_dailydis. #CripTheVote

auntie cistamine @laurenancona

30K Followers 17K Following neurodivergent public servant • learning to help • 338ppm • she • no DMs

EDS UK is committed to changing the futures of people with Ehlers-Danlos syndrome (EDS) and HSD. With awareness and early diagnosis we can change lives.

Ehlers-Danlos Support.. @ehlersdanlosuk

19K Followers 11K Following EDS UK is committed to changing the futures of people with Ehlers-Danlos syndrome (EDS) and HSD. With awareness and early diagnosis we can change lives.

We are real life Zebras! We have Ehlers-Danlos Syndrome hypermobile type, with crossover, plus other delightful stuff.

All opinions are our own.

Steel Zebras 🦓 ♿ @Zebrafishspoony

4K Followers 5K Following We are real life Zebras! We have Ehlers-Danlos Syndrome hypermobile type, with crossover, plus other delightful stuff. All opinions are our own.

Amnesty Media Award 2014. Digital rights policy analyst. Mutant network node herder. Devouring entropy. On the parents committee.

Asher Wolf @Asher_Wolf

75K Followers 55K Following Amnesty Media Award 2014. Digital rights policy analyst. Mutant network node herder. Devouring entropy. On the parents committee.

Stickman Communications Ltd: Creating understanding of disability related needs and issues. Run by Hannah Ensor. Now also on spoutible.

Stickman Communicatio.. @stickmancrips

7K Followers 6K Following Stickman Communications Ltd: Creating understanding of disability related needs and issues. Run by Hannah Ensor. Now also on spoutible.

🚀Space physicist➡️#MECFS researcher🧪
Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome ✨Serendipity Meets Preparation✨

Tess Falor, Ph.D. | @.. @tessfalor

9K Followers 5K Following 🚀Space physicist➡️#MECFS researcher🧪 Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome ✨Serendipity Meets Preparation✨

MIBTP PhD student @Warwick_CMCB in Koester lab & @wingyingchow lab🔬📚🧬 Studying cell biomechanics & collagen/ECM changes in EDS/HSD #biophysics

Sabeeha Malek @SabeehaMalek

3K Followers 959 Following MIBTP PhD student @Warwick_CMCB in Koester lab & @wingyingchow lab🔬📚🧬 Studying cell biomechanics & collagen/ECM changes in EDS/HSD #biophysics

hypermobility (and related conditions) brain-body neuro research @bsmsmedschool | Dr Jessica Eccles | https://t.co/HayQnrkpZk | views own | patron @sedsconnective

BendyBrain: Dr Jessic.. @BendyBrain

8K Followers 2K Following hypermobility (and related conditions) brain-body neuro research @bsmsmedschool | Dr Jessica Eccles | https://t.co/HayQnrkpZk | views own | patron @sedsconnective

I am exploring treatments for my daughter's EDS & ME/CFS & implications for people with #EDS, #MECFS, and #LongCOVID. Not an MD or professional scientist.

Jeffrey Lubell (EDS, .. @JeffLubell_C19

3K Followers 506 Following I am exploring treatments for my daughter's EDS & ME/CFS & implications for people with #EDS, #MECFS, and #LongCOVID. Not an MD or professional scientist.

mom. wife. pediatrician. advocate. warrior. she/her. hEDS, MCAS, dysautonomia, CCI, TMJD. eating disorder survivor. personal views, not medical advice.

Amanda Hinkle, MD, FA.. @AHinkle628

3K Followers 1K Following mom. wife. pediatrician. advocate. warrior. she/her. hEDS, MCAS, dysautonomia, CCI, TMJD. eating disorder survivor. personal views, not medical advice.

Jazz @thepotsghost

45 Followers 137 Following Disabled nurse. POTS MCAS etc etc. Prev? CFS/ME. That flushed tachy bubble life. 👻🧊 the.pots.ghost on threads/gram

random nobody
( @znalo@librem.one || https://t.co/cEK244sCep )

Ambrose Andrews @znalo

294 Followers 2K Following random nobody ( @[email protected] || https://t.co/cEK244sCep )

JennyJenJennJens @SisterLeo

1K Followers 4K Following Burdened with the glorious purpose of finding the perfect Bloody Mary. Possible Loki variant.

OnVousVoit @lavigieNL

268 Followers 848 Following Ehlers danlos syndrome hypermobile, pas rare mais rarement diagnostiqué.

Tanya @77frufru

17 Followers 146 Following

Created by @Fwcdeborah, Chronic Care Compass offers tips and tools to make living with a #ChronicIllness a little easier. #EhlersDanlos #MECFS #Spoonie #POTS

ChronicCareCompass @ChronicCompass1

21 Followers 187 Following Created by @Fwcdeborah, Chronic Care Compass offers tips and tools to make living with a #ChronicIllness a little easier. #EhlersDanlos #MECFS #Spoonie #POTS

Carol Sovey @CarolBoazSovey

66 Followers 233 Following Spread kindness!

Reich beschenkt vom Leben mit zahlreichen Unzulänglichkeiten 🥴 #noAfD, das Herz schlägt links. AfD-Trolle werden sofort geblockt.🙏🏼for🇮🇱

Birgit Reich @Reichsbedenken

1K Followers 1K Following Reich beschenkt vom Leben mit zahlreichen Unzulänglichkeiten 🥴 #noAfD, das Herz schlägt links. AfD-Trolle werden sofort geblockt.🙏🏼for🇮🇱

Davina Killingsworth @dkredeemed

183 Followers 2K Following Live, Laugh & Love, because God is good!!

Georgia 😍 @GeorgiaCory828

2 Followers 586 Following Sensuаl ladу in seаrch оf intimate аdventurеs

Susie Bright @susiebright

18K Followers 7K Following https://t.co/3NRnrfE1ko

@ltsequelae @LSequelae

408 Followers 1K Following Sole director of this account.

ALL MONSTERS ARE REAL. 🦓 🥄 🌚 Follow the PSIence 🤓 Microbiology nerd AF - if you can’t see through the matrix glitches, ask someone for help!

B/\LTH/\ZAR & Dutch V.. @BalthazarBBB

647 Followers 2K Following ALL MONSTERS ARE REAL. 🦓 🥄 🌚 Follow the PSIence 🤓 Microbiology nerd AF - if you can’t see through the matrix glitches, ask someone for help!

Rich Adventure @RichAdventureUK

161 Followers 472 Following Rich Adventure is a family run training provider for outdoor activities and first aid based in Central England

Luna @Enthusiast81087

7 Followers 791 Following

ME sufferer since 1983, too many co-morbidities to list. I miss the old me. I love old VWs and animals and detest what our country has become due to the greedy

Hippymum @Baybabe75

837 Followers 1K Following ME sufferer since 1983, too many co-morbidities to list. I miss the old me. I love old VWs and animals and detest what our country has become due to the greedy

Darci Gilling @DarciGilli6693

32 Followers 5K Following

Landscaper. Gardener. Writer. Mom. Try to be normal but it never lasts long . Still love NPR and Icelandic sheepdogs. #gardentomouth, #floweroftheday

Charlotte Taylor @CharEtay

41 Followers 823 Following Landscaper. Gardener. Writer. Mom. Try to be normal but it never lasts long . Still love NPR and Icelandic sheepdogs. #gardentomouth, #floweroftheday

TheTenaciousCyclist @TheTenCyclist

0 Followers 14 Following Tenacity isn't some optional superpower, it's your inner strength and something we all have if we dig deep enough🦓💪🚴‍

Sasha @GurjinderMassan

203 Followers 2K Following

Ang MW @AngMW74

176 Followers 766 Following

Thora Masenten @masent_tho

42 Followers 5K Following

hEDS - POTS - MCAS - VWD - AuDHD
Medical storyteller with Ehlers-Danlos.
Please consider donating towards medical expenses.
https://t.co/x8BN28b7kU

Kolliez @Kolliez180927

0 Followers 19 Following hEDS - POTS - MCAS - VWD - AuDHD Medical storyteller with Ehlers-Danlos. Please consider donating towards medical expenses. https://t.co/x8BN28b7kU

Theodora Whisenhunt @TheodorWhisenh

46 Followers 5K Following

Dear Disabled 💌 @deardisabled_

73 Followers 273 Following #DearDisabled @AntigoArt 🏳️‍🌈🫱🏾‍🫲🏿🏳️‍⚧️ @ALilBitOFaith @CarmenRFiallo @NicotineCulTech

Lisa Kerney @l_kerne

47 Followers 5K Following

Liz M2004 @lizm2004

29 Followers 475 Following Retired mathematician

Morgane Lunven @MorganeLunven1

20 Followers 441 Following Syndrome de Ehlers Danlos, 📍Brest

Joselyn Vacante @JVacante15938

38 Followers 5K Following

Retired wife, mother & educator coping with the progressive decline of my health from a genetic condition I was born with called Ehlers-Danlos Syndrome (EDS).

Flora_Gal @FloraGal26615

3 Followers 197 Following Retired wife, mother & educator coping with the progressive decline of my health from a genetic condition I was born with called Ehlers-Danlos Syndrome (EDS).

Pekka Puupää 🇺�.. @Raichu_pokem0n

509 Followers 3K Following

ユリ @yurishino719

352 Followers 1K Following 熱海病院で「脳脊髄液減少症」　診断されました。エロ垢🈲ブラッドパッチ　生食パッチ施行中宜しくお願い致します🙇

Focus only on what makes you happy. Reposting funny, cute and helpful stuff for Zebras (eds awareness). Pics and videos are mostly not my own.

Happy Zebra @CheeryZebras

70 Followers 147 Following Focus only on what makes you happy. Reposting funny, cute and helpful stuff for Zebras (eds awareness). Pics and videos are mostly not my own.

StevenJSmithMD3 @j_md338936

43 Followers 232 Following

Billions of people dream of cures for Invisible Illnesses.
We merge patient intelligence & AI to make their dreams come true.
Watch us bring cures to life!

Michael Neuvirth @LetsGoCure

1K Followers 283 Following Billions of people dream of cures for Invisible Illnesses. We merge patient intelligence & AI to make their dreams come true. Watch us bring cures to life!

🇨🇳 Washed up Chinese celebrity 🇨🇳
Practice Manager for a Clinic focused on Complex Conditions
Ex-McKinsey consultant, lifelong country musician

David Jameson @DavidJamesonH

178 Followers 1K Following 🇨🇳 Washed up Chinese celebrity 🇨🇳 Practice Manager for a Clinic focused on Complex Conditions Ex-McKinsey consultant, lifelong country musician

HGTP://FlannelZebra�.. @FlannelZebra

1K Followers 4K Following '18 $LINK Marine | `19 $DAG chad $LYX $ADS $FTM $LRC $GRT $AZERO $TIA $SNX OCM !RISE NEET | Disabled | Autist | Terrible trader/NFA

lilmisssailormouth @lilmisssailor

30 Followers 71 Following my cats are my happy place 🥰

Chronic Fatigue.
Orthostatic Hypotension.
Heat Intolerance.
Impaired Cognition.
Possible CCI.
Possible brainstem compression.

#mecfs #mespine #severeme

Andy @AndyBayo_

362 Followers 2K Following Chronic Fatigue. Orthostatic Hypotension. Heat Intolerance. Impaired Cognition. Possible CCI. Possible brainstem compression. #mecfs #mespine #severeme

Heather Vernasco @HVernasco

359 Followers 2K Following I’m just browsing…………

T Rocks @TRocks_Ag

227 Followers 798 Following

Scientist; feminist; interested in everything! Special interest in healthcare, Ehlers-Danlos syndromes and hypermobility. All views are my own.

Kay Julier (she/her) @KayJulier

820 Followers 412 Following Scientist; feminist; interested in everything! Special interest in healthcare, Ehlers-Danlos syndromes and hypermobility. All views are my own.

Metrodora Foundation @MetrodoraFdtn

367 Followers 419 Following Catalyzing scientific collaboration and discovery to find cures for chronic, multisystem disorders.

Writing about #hEDS 🦓, #muscle, health☕️, genetics, and how I’m trying to walk again🌱 #bedbound #homebound #calfproblems #zoology

Amanda Crist @ZebraLoveCo

213 Followers 442 Following Writing about #hEDS 🦓, #muscle, health☕️, genetics, and how I’m trying to walk again🌱 #bedbound #homebound #calfproblems #zoology

Socialist Vegan.
Ehlers Danlos Syndrome & Nocturnal Epilepsy.
Autistic, Arthritic, Idealistic.
Traffic Light enthusiast.
No gender in Violence, hate or fear.

Xander (He/Him)🏳�.. @cybermaninpain

101 Followers 242 Following Socialist Vegan. Ehlers Danlos Syndrome & Nocturnal Epilepsy. Autistic, Arthritic, Idealistic. Traffic Light enthusiast. No gender in Violence, hate or fear.

neurospicy activist, chronically ill LC/POTS/EDS/MCAS & co, content creator, model, actress, #TPWK & wear a mask😷♿️🦓🥄🫶🏼FREE PALESTINE🇵🇸🍉

k8lyn🦋😷🍵💐.. @ka1tIyn11

2K Followers 5K Following neurospicy activist, chronically ill LC/POTS/EDS/MCAS & co, content creator, model, actress, #TPWK & wear a mask😷♿️🦓🥄🫶🏼FREE PALESTINE🇵🇸🍉

Shannon Beaudette @ShannonBea8024

3 Followers 17 Following

relaxjolene @relaxjolene

117 Followers 834 Following And back to your regularly scheduled broadcasting.

Freelance writer, disabled. DNI: pro-'life', MAGA, Minors, terfs, right-wing
Quote-tweet your friends, screenshot your enemies.He/Him/His

kthsdlr . bsky.social.. @kthsdlr1

529 Followers 5K Following Freelance writer, disabled. DNI: pro-'life', MAGA, Minors, terfs, right-wing Quote-tweet your friends, screenshot your enemies.He/Him/His

Kelly @laydeehyper19

334 Followers 1K Following Runs and works @ Home-Elementals

Candace D. @DiaryofaSickGrl

12K Followers 1K Following Wife. Mother. Dog mom. Chronic illness advocate. 🥄♥️ #hEDS, #MCAS, #POTS, #foodallergies, #cornallergy, etc.

Jeannie Di Bon @jdibon

10K Followers 1K Following Internationally recognised EDS/HSD Movement Therapist. 15 yrs EDS experience. Author, Speaker, Educator. IMM, The Zebra Club & Moovlite. MSc Pain Mgt

currently: haunted / unwell & host of No End In Sight, creator of #NEISVoid, a keeper of @RTsFromTheVoid. find me on 🦣: @bennessb@spore.social she/her.

stable finally, getti.. @bennessb

27K Followers 693 Following currently: haunted / unwell & host of No End In Sight, creator of #NEISVoid, a keeper of @RTsFromTheVoid. find me on 🦣: @[email protected] she/her.

🩺 Pain & inflammation specialist 🦓 Ehlers-Dani’s, HSD & MCAS 🎙Founder Bendy Bodies Podcast ⚕️@mayoclinic trained 🚫Not medical advice.

Hypermobility MD: Dr .. @BluesteinLinda

8K Followers 662 Following 🩺 Pain & inflammation specialist 🦓 Ehlers-Dani’s, HSD & MCAS 🎙Founder Bendy Bodies Podcast ⚕️@mayoclinic trained 🚫Not medical advice.

It'sME(Jaime) @exceedhergrasp1

20K Followers 5K Following Director of Sci & Med Outreach, #MEAction Stanford Med #ME, #EDS, #POTS, #LongCOVID Views my own [email protected]

International Labour Lawyer
Patient Advocate for #hEDS #POTS #LongCovid #rheumatoidarthritis #Dysautonomia
Focusing on marriage, parenting & chronic illness

Renuka Dhinakaran @renudhinakaran

6K Followers 602 Following International Labour Lawyer Patient Advocate for #hEDS #POTS #LongCovid #rheumatoidarthritis #Dysautonomia Focusing on marriage, parenting & chronic illness

Chronic Illness Researcher. Science of #MECFS #LongCovid #POTS #EDS #MCAS CCI SFN Lyme etc & How They Connect🕵🏻‍♀️Scientist/Advocate Be_Kinder@disabled.social

Bea is Chronically Pe.. @Be_Kinderr

11K Followers 3K Following Chronic Illness Researcher. Science of #MECFS #LongCovid #POTS #EDS #MCAS CCI SFN Lyme etc & How They Connect🕵🏻‍♀️Scientist/Advocate [email protected]

Postdoctoral Fellow at MUSC | Driving Research Progress in the Ehlers-Danlos Syndromes | Passionate about Science Communication and Education

Cortney Gensemer, PhD @CortDoesScience

7K Followers 937 Following Postdoctoral Fellow at MUSC | Driving Research Progress in the Ehlers-Danlos Syndromes | Passionate about Science Communication and Education

Oh TWIST! @H2OhTwist

9K Followers 4K Following Oh, That's Why I'm So Tired! Ehlers-Danlos Syndrome survivor & writer. She/her. Co-author #EDSToolkit for doctors. EDS / HSD isn't rare, just rarely dxed. PDX.

Joanna No Banana @JoannaNoBanana

31K Followers 21K Following Joanna (she/her) 28 Queen of Allergies 👑 MCAS, POTS, EDS & CCI💛 Autistic, ADHD, OCD. PMDD. Check out @allergybeauty for allergy friendly products!

Emily Johnson (is on .. @emily_rj

8K Followers 6K Following Digital journalism. Design, news/book edits, linguistics, data, tech. Medical + academic research. Disability in news consults. @the_dailydis. #CripTheVote

Research, algorithmic music, machine learning/AI, anti-bias in AI data. #LongCovid research & advocacy @patientled. they/them. DMs rarely checked

Hannah Davis @ahandvanish

60K Followers 4K Following Research, algorithmic music, machine learning/AI, anti-bias in AI data. #LongCovid research & advocacy @patientled. they/them. DMs rarely checked

auntie cistamine @laurenancona

30K Followers 17K Following neurodivergent public servant • learning to help • 338ppm • she • no DMs

The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).

The Ehlers-Danlos Soc.. @TheEDSociety

24K Followers 6K Following The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).

Ehlers-Danlos Support.. @ehlersdanlosuk

19K Followers 11K Following EDS UK is committed to changing the futures of people with Ehlers-Danlos syndrome (EDS) and HSD. With awareness and early diagnosis we can change lives.

Writer, maker, chronic illness incubator. Disabled journo. Words in @guardian, @MetroUK, @theipaper, @BylineTimes etc. Rep’d by @PortyLiterary

Laura Elliott @TinyWriterLaura

14K Followers 2K Following Writer, maker, chronic illness incubator. Disabled journo. Words in @guardian, @MetroUK, @theipaper, @BylineTimes etc. Rep’d by @PortyLiterary

ME/CFS is a connective tissue disorder caused/worsened by a virus. Ppl w/ ME/CFS & EDS often suffer from Craniocervical Instability & Occult Tethered Cord.

Karen Lubell @karenlubell

3K Followers 2K Following ME/CFS is a connective tissue disorder caused/worsened by a virus. Ppl w/ ME/CFS & EDS often suffer from Craniocervical Instability & Occult Tethered Cord.

Steel Zebras 🦓 ♿ @Zebrafishspoony

4K Followers 5K Following We are real life Zebras! We have Ehlers-Danlos Syndrome hypermobile type, with crossover, plus other delightful stuff. All opinions are our own.

hannah 🍉 @autistichannahh

13K Followers 5K Following 25. autism 💙💜🩷 @hannaweeny

Sympt.Hypermobility EDS HSD NEURODIVERGENT vol. Charity / health/education/care/work
Chair/Founder Jane Green MBE @JGJanegreen
Patron Dr Eccles @Bendybrain

SEDSConnective @SEDSConnective

5K Followers 3K Following Sympt.Hypermobility EDS HSD NEURODIVERGENT vol. Charity / health/education/care/work Chair/Founder Jane Green MBE @JGJanegreen Patron Dr Eccles @Bendybrain

Charlie LMSW Expert o.. @CharlieShrimp

536 Followers 2K Following Her/She/Mum of They/Them/Honey-Pie Lives in Splendid Isolation #GravesDisease #EDS sucks.

🕸️Dr.T, PhD @chydorina

14K Followers 5K Following @beHLTHI (coming soon) https://t.co/tSP1jTVn1w

K Harper @KatHarp1234

93 Followers 322 Following #ActuallyAutistic, hEDS, dotty history loving cat adoring

Big fan of science, human rights, democracy & the Cleveland Browns. Military wife. Mother of wigglebutts. hEDS, POTS, MCAS. #NEISvoid #WearAMask

Kameron 🦓 @McKinneyKameron

159 Followers 891 Following Big fan of science, human rights, democracy & the Cleveland Browns. Military wife. Mother of wigglebutts. hEDS, POTS, MCAS. #NEISvoid #WearAMask

Sammy gaffney @hotsammy77

15 Followers 57 Following Mum of 3, nanny to two beautiful girls, fibro warrior

Author of Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand. NYT; WashPost; Discover; Slate; Stat News… She/her.

Julie Rehmeyer @julierehmeyer

8K Followers 1K Following Author of Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand. NYT; WashPost; Discover; Slate; Stat News… She/her.

Tess Falor, Ph.D. | @.. @tessfalor

9K Followers 5K Following 🚀Space physicist➡️#MECFS researcher🧪 Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome ✨Serendipity Meets Preparation✨

80s/90s indie kid. Happiest when dancing. Billy Bragg fanatic; Grace Petrie addict. Fake Empire obsessed.
Primary English lead, HSD, lefty. She/Her

Lisa Beth Black @lisabethblack2

551 Followers 2K Following 80s/90s indie kid. Happiest when dancing. Billy Bragg fanatic; Grace Petrie addict. Fake Empire obsessed. Primary English lead, HSD, lefty. She/Her

S.Tempel @Tempel1974

187 Followers 1K Following

Anti-forced fostering & adoption. Exposing judicial abuse. Parent Advocate. Autistic & hEDS Mum. Wannabe writer. #EndHumanTrafficking #BirthFamilyMatters

GaggedParentAlliance @DoryDayDreamer

70 Followers 464 Following Anti-forced fostering & adoption. Exposing judicial abuse. Parent Advocate. Autistic & hEDS Mum. Wannabe writer. #EndHumanTrafficking #BirthFamilyMatters

#Latinx Do not mistake my kindness for weakness. #LongCovid #MECFS #intersectionalfeminism STOP THE FUCKING GENOCIDE 😷🇵🇸 NO JUSTICE NO PEACE

oracling in the fucki.. @noralove

2K Followers 2K Following #Latinx Do not mistake my kindness for weakness. #LongCovid #MECFS #intersectionalfeminism STOP THE FUCKING GENOCIDE 😷🇵🇸 NO JUSTICE NO PEACE

🌕🦋 @stars4321xx

763 Followers 1K Following autistic🏳️‍🌈lesbian ·sober· obsessively healing 23 she/her °disabled° bpd ocd cptsd fibromyalgia 🤍 more surprises to come

Kirsten🥄 @saveyourspoons_

91 Followers 1K Following Fibromyalgia/CFS/Migraines and more🥄 she/her #NEISVoid

madii @madiiiicherry

70 Followers 321 Following 23 || queer || she/her || your fav blue badge bestie || unapologetic lefty ||

Neurological physiotherapist with https://t.co/3BfNtxTDCW
working with conditions affecting brain, spinal cord and nervous system /
Co-founder @PhysiosForME

KarenPhysioCoUk @karenphysiocouk

4K Followers 2K Following Neurological physiotherapist with https://t.co/3BfNtxTDCW working with conditions affecting brain, spinal cord and nervous system / Co-founder @PhysiosForME

Deekay @DianeK79

94 Followers 608 Following 🦓I watch too much reality tv and talk about chronic illness a lot. EDS POTS MCAS SFN warrior.🦓

Dr. Gwen Arnold | UCD Center for Environmental Policy and Behavior | Assoc editor, @PSJ_Editor | environmental governance | dog rescue helper | Ehler's Danlos

policyandpuppies (bsk.. @policyandpups

outrageous contempory knitaholic, animal custodian and lover of science and music. Slightly lopsided way of thinking, causing much hilarity

ramara joyette @beesilverman

61 Followers 205 Following outrageous contempory knitaholic, animal custodian and lover of science and music. Slightly lopsided way of thinking, causing much hilarity

greta b @gretabossetta

891 Followers 2K Following Virago Semper fidelis

Rural arts nerd, raggedy-ass nonprofiteer, stray-cat vigilante. #Disabled. Hashi's, EDS, collapsing spinal fusion. Design/comms freelancer. Hire disabled ppl!

CatToy 🐀 @HilHere

193 Followers 931 Following Rural arts nerd, raggedy-ass nonprofiteer, stray-cat vigilante. #Disabled. Hashi's, EDS, collapsing spinal fusion. Design/comms freelancer. Hire disabled ppl!

Tree @forestvanslyke

6K Followers 6K Following AuDHD thinker & writer studying miscommunications. Anti cancel culture. Buy my books ⬇️

Anne Romatowski @anneromatowski

465 Followers 2K Following https://t.co/RksrGRXZHL Day jobs: FinTech, Racial Wealth Equity, Cities. Other stuff: #MECFS caregiving, #NEISvoid, #hEDS, #POTS

Birding, Watercolour and mixed media, Gardening, plant based dyes, drying flowers. Zambuk was the greatest salve ever! EDS endured

gaggie 💙 NHS @bren_ambler

175 Followers 179 Following Birding, Watercolour and mixed media, Gardening, plant based dyes, drying flowers. Zambuk was the greatest salve ever! EDS endured

MSc(Res) Chemical Biology at University of Oxford with the McCullagh Group looking into redox vulnerabilities in cancer. Also interested in #EDS 🦓

Paige @paige_ne

40 Followers 100 Following MSc(Res) Chemical Biology at University of Oxford with the McCullagh Group looking into redox vulnerabilities in cancer. Also interested in #EDS 🦓

Médico y devoradora de libros. Pasión por los coches y la fotografía. Sueño con probar el circuito de Nurburgring algún día

me/cfs seeker @mecfs_seeker

238 Followers 681 Following Médico y devoradora de libros. Pasión por los coches y la fotografía. Sueño con probar el circuito de Nurburgring algún día

🌱 #BLM •She/They • Pan • Demi • Disabled • Intersectional Feminist • ActuallyAutistic • INFJ • Disnerd • DVSurvivor• ADHD• Neurodivergent • Hippie • Baby Witch

Odette Turan Swan @beesinmyattic

227 Followers 2K Following 🌱 #BLM •She/They • Pan • Demi • Disabled • Intersectional Feminist • ActuallyAutistic • INFJ • Disnerd • DVSurvivor• ADHD• Neurodivergent • Hippie • Baby Witch

30 • she/her • chronically ill & disabled • I like cats, tea and D&D • tweets in both English & Dutch • no one is safe until everyone is safe

Len @lenscupoftea

776 Followers 728 Following 30 • she/her • chronically ill & disabled • I like cats, tea and D&D • tweets in both English & Dutch • no one is safe until everyone is safe

Super (tired) Mama @SD10895

342 Followers 639 Following Stay at home mom 💜

27. Chronically ill with severe-very severe Myalgic Encephalomyelitis (ME/CFS) + comorbidities. Autistic. Spanish-Venezuelan living in the US since 2021. 🏴🇵🇸

Isa 🛌 🍉 @anardiska

385 Followers 377 Following 27. Chronically ill with severe-very severe Myalgic Encephalomyelitis (ME/CFS) + comorbidities. Autistic. Spanish-Venezuelan living in the US since 2021. 🏴🇵🇸

Amy the human @AmyPuddytat

44 Followers 180 Following Aimée by name, haïe by nature.

Kate Woolard @maikastar

130 Followers 809 Following Yorta Yorta. Bleeding heart, bibliophile, BPALista. Metastatic GIST fighter

Kness @_kness

58K Followers 864 Following 🦦Cute pottery 🐐 Commissions Open https://t.co/4OdDz0Ak2h

Proud to serve Highlands and Islands with service updates 7 days a week. We’ll answer your Tweets Mon-Fri 8am-6pm and Sat-Sun 9am-5pm.

Stagecoach Highland @StagecoachHLand

4K Followers 503 Following Proud to serve Highlands and Islands with service updates 7 days a week. We’ll answer your Tweets Mon-Fri 8am-6pm and Sat-Sun 9am-5pm.

tiffany @tiffany38508479

60 Followers 683 Following ~still a peds nurse at heart~💜

Student Nurse (Adult) 🩺 | Psych & Ed grad | HCA | @ehlersdanlosuk Area Coordinator | interests in EDS; haematology; surgical nursing

emma @ECourtneyOwen

131 Followers 243 Following Student Nurse (Adult) 🩺 | Psych & Ed grad | HCA | @ehlersdanlosuk Area Coordinator | interests in EDS; haematology; surgical nursing

Dr. Rhodes @MeanderingRhode

1K Followers 3K Following Doctor. Traveler. Thinker. MPH student. she/her 🦓🦐🦀🏥🌈🔥💉♿⚜🇺🇸🧶🧵 EDS. Service dog handler 🐩 #DocsWithDisabilities #DisabledDocs

multimedia director 💻🎨| this is my alt acct for sharing research & ideas re: managing #EDS #hEDS #HSD #POTS #MCAS #TMD + dynamic disabilities. she/her 🖤

Alissa🕸hEDS manage.. @badelastic

785 Followers 280 Following multimedia director 💻🎨| this is my alt acct for sharing research & ideas re: managing #EDS #hEDS #HSD #POTS #MCAS #TMD + dynamic disabilities. she/her 🖤

Raising awareness for all with ME, Haemophilia, Epilepsy & EDS! I've a loud voice & strong passion for people who deserve justice! Sami Berry

Firecracker @Fighting4M_E

2K Followers 1K Following Raising awareness for all with ME, Haemophilia, Epilepsy & EDS! I've a loud voice & strong passion for people who deserve justice! Sami Berry

❄yeti❄ @yyyetii

2K Followers 1K Following Post Apocalyptic Linda Belcher https://t.co/8gYbqDI0rW https://t.co/bGw4AzC9ll https://t.co/JVHd9KpaiX

Intractable pain warrior. I'll continue to FIGHT the bias, stigma & forced suffering caused by ignorance & fear. We all need to come together to affect change!

Jessica Lavoie @Cyanytlas

706 Followers 415 Following Intractable pain warrior. I'll continue to FIGHT the bias, stigma & forced suffering caused by ignorance & fear. We all need to come together to affect change!

Tessa @the_tessallator

793 Followers 2K Following Recent Biophysics PhD @harvard med | computational immunology | transcriptomics | @hgsuuaw healthcare | she/her 🏳️‍🌈👩‍💻

26 yo • UK 🇬🇧 Micro Influencer • Spoonie • You Will find me obsessing over Disney, Bands and Books ♡︎ chloejadehardiman123@gmail.com

Chloe ♡︎ @heyitschloejade

678 Followers 2K Following 26 yo • UK 🇬🇧 Micro Influencer • Spoonie • You Will find me obsessing over Disney, Bands and Books ♡︎ [email protected]

Posting what I found in over 18 years of searching Google Earth. No claims are made about what is posted if not otherwise stated. Globespotter@proton.me

GlobeSpotter @GlobeSpotter

4K Followers 0 Following Posting what I found in over 18 years of searching Google Earth. No claims are made about what is posted if not otherwise stated. [email protected]

Bonnie Mitchell @BonnieM9194

282 Followers 1K Following educator•lawyer•researcher•living with Ehlers Danlos Syndrome #EDS #MCAS #POTS #CCI #OTC #spinalcordinjury #longhauler

National Deputy Director for Clinical Effectiveness. Proud to be a nurse. Mum to 3, proud & exhausted in equal measures. patient safety #1. Views are my own.

Dr Victoria Savin de .. @VicksWright81

401 Followers 464 Following National Deputy Director for Clinical Effectiveness. Proud to be a nurse. Mum to 3, proud & exhausted in equal measures. patient safety #1. Views are my own.

#Boredwalk Ambassador. Recovering overachiever. Science nerd. #Busyhead #Zebra #Marketing
Views are my own. Retweets do not reflect endorsement.

Joy (she/her) 🍀 @joysef99

246 Followers 618 Following #Boredwalk Ambassador. Recovering overachiever. Science nerd. #Busyhead #Zebra #Marketing Views are my own. Retweets do not reflect endorsement.

Aly @rnerdie98

344 Followers 385 Following 25| nerd 'n' nurse|🏥❤|#adhd #autistic | she/her

Angela Rashida ❤️🇵🇸❤️ @Angela_Rashida

5 days ago

@autistictic Sorted out the autism when I was 42, around 5 years ago now. I currently hold the job I've had the longest in my WHOLE LIFE (18 months) because I have a VITAL support called working from home. It's changed my entire relationship with work (which I have no choice about).

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Roly Peck 💙 @rolypeck

5 days ago

It is this furry old devil's 19th birthday today. He has already enjoyed lickelix and tuna and shrimp for his breakfast 🥳🎂🎁

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Roly Peck 💙 @rolypeck

a week ago

#SaveCarasLife #ExposeMEnow

Sarah @SarahLizzyLou

a week ago

I should be resting but I’m here protesting. 23-year-old Carla is experiencing medical abuse at West Middlesex Hospital. She has #severeME. We demand that staff follow NICE guidelines for ME now. #SaveCarlasLife #ExposeMENow

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Jeannie Di Bon @jdibon

a week ago

Please don’t assume that EDS / HSD patients aren’t trying hard enough with their exercises. You won’t see the same pace of change as a non EDS patient. There are many reasons people may struggle with exercise. Listen to their whole story before making assumptions.

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Jeannie Di Bon @jdibon

2 weeks ago

And just like that my last assignment for my MSc Pain Management is submitted 😅. Now to the dissertation 😀. #hypermobility

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Jeannie Di Bon @jdibon

2 weeks ago

@MsRobinHosking I agree other conditions are now included in this but it stands for EDS still. You’d be shocked at the patient stories I hear every day. Plus this runs deep - I’m seeing clients in their 50s & 60s who have only just been diagnosed. They’ve lived this.

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Alisontomyradio @arisonsned

2 weeks ago

@jdibon Bane of my life! Thanks for this.

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Cleo 🦓♿️💙 @SpoonieTrees

3 weeks ago

You know what enabled me to treat my various symptoms as needed? Leaving all the stuff out where I could see it. You know what 100% fails to help? Tidying it all away so I inevitably have no idea where I've put it when I need it. Stay messy, spoonies. We medically need to! 👍🏻

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@suttonsroller @suttonsroller

4 weeks ago

Sutton’s next horse #rhobh

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Orwell420 🇵🇸 @Orwell420

4 weeks ago

@HTempestPhoto Absolutely horrific, wtf was the ableist idiot thinking, don’t think I’ve ever been more shocked & disgusted. Please explain their thought process in deciding this, I’m assuming they’ve been sacked & police are investigating the disability discrimination?

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Nature is Amazing ☘️ @AMAZlNGNATURE

a month ago

This man is buying birds just to set them free..🐦❤️

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Bad Medical Takes @BadMedicalTakes

a month ago

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Rachel @OpenMindMH

a month ago

@EJWoolf So? What's it to you? These people might have chronic health problems or lung conditions & air pollution or Covid could make them very unwell. Do you tweet about it if you see somebody walking down the street with a cycle helmet on but no bike or do you just get on with it?

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Not Any Use @NotAnyUse

a month ago

Most women have seven to fourteen years of healthy adulthood where they aren’t a caregiver or otherwise on call for death or infirmity. Stay out. See dawn from both sides. Have another drink. Move somewhere weird. Buy jewelry, fight loudly, be silent for days. Visit a cactus.