Ehlers-Danlos Support UK
@ehlersdanlosuk
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.
ID: 869824183
http://ehlers-danlos.org 09-10-2012 12:42:40
16,16K Tweet
18,18K Followers
10,10K Following
Karen Lubell
@karenlubell
ME/CFS is a connective tissue weakening caused/worsened by a virus. This can lead to Craniocervical Instability, Venous Compressions, CSF leaks and more.
The Ehlers-Danlos Society
@theedsociety
The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
Isobel Knight
@isobelknight2
Internationally published author on hypermobile Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Narrative Medicine & Bowen Technique.
Kellie
@kellienz
She/her - Pakeha - cat lady - MS - dreamer of a better world - am listening but haven't found my voice yet
Renuka Dhinakaran
@renudhinakaran
International Labour Lawyer Patient Advocate for #hEDS #POTS #LongCovid Focusing on marriage, parenting & chronic illness
Laura Elliott
@tinywriterlaura
Writer, maker, disabled journo. Words in @guardian, @MetroUK, @BylineTimes etc. Debut novel AWAKENED out with @angryrobotbooks June 2025. Rep @PortyLiterary
Professor Lara Bloom
@larabloom
President & CEO @TheEDSociety•Prof of Practice Patient Engagement & Global Collaboration•Rare & Chronic Disease Advocate•🏳️🌈Gay•She/Her• Views my own
Stickman Communications ltd
@stickmancrips
Stickman Communications Ltd: Creating understanding of disability related needs and issues. Run by Hannah Ensor. Now also on spoutible.
chels♥
@chelseabuns__
she/her
Jeannie Di Bon
@jdibon
Hypermobility & EDS | Movement Therapist | Author of "Hypermobility Without Tears" | jeanniedibon.com | Founder of The Zebra Club
JB
@junebaker3
Laura-Beth Thompson
@laurabeth_t
Mum passionate about raising awareness of #BirthTrauma #GE24 candidate.
EDS Awareness
@edsawareness1
An online resource for the EDS and HSD community. We provide informative resources and education for patients, families and physicians.
MaritimesinCowtwn
@maritimesinyyc
Maritimer currently living in cowtown. Historically #blockedbyDanielleSmith
Avril Quinn
@avquinn1
Eh-vah
@evapalencarova
Me
ilkytsn
@ilkytsn
Debbie Clark
@debbieclark58
Hi, my name is Debbie Clark, and I’m raising funds for my sister, Tamara Sullivan (Tammy).
OhTWIST.bsky.social now too
@h2ohtwist
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 diagnosed.
Facts not Fearmongering
@marcdraco63
@marcdraco.bsky.social The Marmite brain in a jar of RoundUp. Questioning "facts" is not ad hominem regardless. Sorry, PMs closing due to SPAM - thanks Elon.
☆ ayasa☆ OT×patients
@ponpon04ponpon
#作業療法士（急性期HP→整形CL→急性期HP→無職） OTとしての新しい働き方を模索中 #難病 を抱えるアラサー。手帳2級、電動車椅子ユーザー♿️。アクティブでありたい。ディズニー、旅行に行く事を常に目標にする事で頑張れる。辛い事は笑っていれば乗り越えられると思っている。
Rebecca
@beckworgan
Strongly dislike this platform, please find me on threads or Instagram.
Alissa Zingman MD MPH - ZebraMD
@doczing
PRISM Spine and Joint, prismsj.com, Research EDSRF.org, Hypermobility Care, Wife/Mom/CEO/Dancer. Tweets are not medical advice.
Leather On Willow
@bradman_tv
There's no sweeter sound than the crack of leather On willow.....
Carriemello
@kiss_my_xp
Healer, Mother, Music Lover. Gamer Chick, Modelling Pics. Photography Whiz, In the Biz of Wigs. Corset Wearer, Positivity Bearer. Engaged to SP 💝
Laura Coffey
@lauracoffey_psy
Lecturer @MUpsychdept, member of @All_Institute. Research interests in #healthpsychology #RehabPsych #chronicillness #disability. Views my own.
BendyBrain: Dr Jessica Eccles
@bendybrain
hypermobility + related conditions brain-body neuro research @bsmsmedschool | Chair RCPSYCH NDPSIG | Linktr.ee/bendybrain | @bendybrain.bsky.social
SEDSConnective
@sedsconnective
Hypermobility EDS / HSD Pain NEURODIVERGENCE ADHD Autism Dyspraxia TS Dyslexia Chair/Founder Jane Green MBE @JGJanegreenMBE Patron Dr Eccles @Bendybrain
Joanna No Banana
@joannanobanana
Joanna (she/her) 29 Queen of Allergies 👑 MCAS. POTS. EDS. CCI 💛 Autistic. ADHD. OCD. PMDD. Striving to live my best life 💕 #ForTinu
Sabeeha Malek, PhD
@sabeehamalek
Postdoctoral Researcher @Warwick_CMCB in Koester lab & @wingyingchow lab🔬📚🧬 Studying cell biomechanics & collagen/ECM changes in EDS/HSD #biophysics
Sue
@suehere6
Clinical Psychologist. Disliker of reductionist bios. Including this one 🤷🏻♀️
collagen machine broke
@chronicallybeee
dyke | she/they | #FreePalestine
iceandlemon🥤
@iceandlemooon
Elizabeth #stopsim
@lizanelly1
Whistleblower. Disabled due to mh/physical health conditions. Adopted care leaver.#autismnotpd
Candace D.
@diaryofasickgrl
Wife. Mother. Dog mom. Chronic illness advocate. 🥄♥️ #hEDS, #MCAS, #POTS, #foodallergies, #cornallergy, etc.
T
@nofo__allmo
Queen of Vertigo👸Empress of Brainfog👑Wanderluster Interrupted🌎Inconsistent Gardener🌱#SevereMECFS #MigraineWithBrainstemAura #VestibularMigraine +etc,etc🙄
Jayne
@jayne25233215
Angelina Marie Tamez
@angelinatameztx
A rose that grew out of concrete. Auntie, Tejana, Humanitarian, Advocate. Always in the fight.
Cheri
@cherisuzanne7
To handle yourself, use your head; to handle others, use your heart. ...
Laufos
@laufos2
Brooke Monroe
@depressedplaid
Surviving is my super power.
Gokain
@gokain77
Red Devil
Shannon Zakaib
@shannonzakaib
ANewMe444
@anewme2b
Just glad to be alive.
Vave
@quant_wave
Anonymous quant, with a background in GenAI and interests in medicine.
TackyScooter
@tackyscooter
Stationary and planner aficionado, American 🇺🇸, Grandma’s nickname was “Tack” and my nickname is Scooter so I put them together 💜. RIP Shelby 09/25/24
Gen James C. McConville
@genjames157
this life is all about achievement, I thanks GOD for the kind professional he gave me.
Mizzaxe
@kat47505
Sammy
@sammyja1993
Totally blind. BSC)HONS) Psych)open)🎓👩🎓 Want to be a doctor. Weather enthusiast and acoustic shooter.👩🦯🎶🙏🧪🩹🩺💉
Noah Conor
@conor_noah37289
LuxyME💙
@luxyme_
Myalgic Encephalomyelitis ❤️🩹 Encefalomielitis Miálgica ❤️🩹 #pwme #Anpe #Pots #HOPE 💚
AretiredRNof35yrs
@rnof35yrs
Love others, enjoy the small things in life!
alyssal
@alyssal493096
🙏 🙏 🙏 🙏 🙏 🙏 🙏 🙏
Marion Hewitt
@minnanaia
عمر صافي خليل
@mkhlyl62711
Navigate Chronic Pain
@navigatechronic
Our AI companion draws its knowledge from the world's leading pain specialists & therapists — always private, always judgment-free, always when you need it.
'Aqil Guirguis
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Pam
@pam841760310972
Say Re
@rosyblue129
HelpAlek
@helpalek
All hjälp uppskattas❤️ Läget är akut! Gofundme: gofund.me/52e226b8 Instagram: @alekpalek
Andrea Heffernan
@andreahefferna3
Kelli Stiles
@kellistiles
Merinda Tully
@merindatully62
#BecomeFibroAware
Thomas Smith
@yellowranger04_
LV32 gamer. Expect tweets of random game achievements, life experiences and general shit posting. Bisexual. He/Him
Bea is Chronically Persisting✨
@be_kinderr
Chronic Illness Researcher. Science of #MECFS #LongCovid #POTS #EDS #MCAS CCI SFN Lyme etc & How They Connect🕵🏻♀️Scientist/Advocate [email protected]
Ru 🌸♿️ (she/they) 🎀
@rollwithru
queer disabled activist who is a lover of all thinks pink 🩷🌸🧚♀️🎀 ♡ cosplayer | streamer | activist ♡ 🌸for collabs/enquiries: [email protected]
SickOfBeingSick
@dani_elle_87
We stress over everything, until we get sick. Then we realize there was only ever one thing that was really important-Our health 🫶🏻 #ME #FIBRO #POTS #MCAS
Hypermobility MD: Dr Linda Bluestein
@bluesteinlinda
🦓 Expert on Ehlers-Danlos, HSD, MCAS & Chronic Pain🎙Host Bendy Bodies Podcast 🩺Information, not medical advice.
Emma Smith
@emmacbsmith
Alyson
@mewsquerade
She/Her. AuDHD. BDO enthusiast. ADC main @ LoL. INFP/ISFP. Taurus/Year of the Dog. Atheist. I love pizza, Mew plush, & my pets. IGN: Mewsquerade.