EDS Awareness @EDSawareness1
An online resource for the EDS and HSD community. We provide informative resources and education for patients, families and physicians. linktr.ee/EDSAwareness United States Joined May 2012-
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Unraveling Tethered Cord for EDS Patients (simplified version) buff.ly/3wsVaUR #EhlersDanlos #EDS #hEDS #Hypermobility #HSD #TetheredCord #TC #CPP #MedEd #MedTwitter #Doctors #Neurosurgeons #NEISvoid #Medicine #FOAMed
hEDS & HSD have the same severity. Many people perceive HSD as a lesser condition but I have many clients severely impacted by HSD. I treat the individual, not the disgnosis. And there can be co-morbid conditions like POTS, MCAS, ME, CFS, osteoporosis, arthritis on top.
Preventive Care Recommendations for Patients with the Ehlers-Danlos Syndromes - how to avoid as many additional issues as possible with #EDS #HSD et al buff.ly/44q1Cb1 #hEDS #NEISvoid #MedEd #MedTwitter #medicine #Genetics
Bend, But Don’t Break the Bank: Financial Resources for EDS Patients buff.ly/3HvpuB8 #EDS #hEDS #HSD #Hypermobility #NEISvoid #Finances #Poverty #MedicalDebt #MedTWitter #Zebras
Are you a gastroenterologist? Save lives by finding out what you need to know about VEDS: bit.ly/3mcmUbm #VEDS #MedTwitter #Gastroeterology
“We are starting today with our favorite #books! Whether that’s #medical books, fiction, children or young adults, there is a book for everyone! This is meant as a community-centered list": buff.ly/43PQ9T8 via @EDSawareness1 #ChronicIllness #EDS #EhlersDanlosSyndrome
📘 In "The Fourth Wing," author Rebecca Yarros shines a light on the rare genetic disorder Ehlers-Danlos Syndrome (EDS). 🧬 By portraying the protagonist's struggle with EDS as heroic, Yarros accurately represents the strength and resilience of rare disease communities and…
Share the #EDSToolkit for doctors spearheaded by Dr. Reinhold in 2018 for NHS GPs, but available to anyone willing to learn more about #EhlersDanlos & #hypermobility Spectrum Disorders! buff.ly/3ob40zM #MedEd #FOAMed #MedTwitter #NEISvoid
Our Clinical Trials page is a gateway to understanding the ongoing efforts in Mast Cell treatment and research. It's a resource for you to stay informed about the latest studies and advancements. Gain insights into the scientific strides being made. buff.ly/44478Aj
Friday May 17th is #REDS4VEDS Day. Show your support for our friends at @AJsChallenge and people everywhere living with Vascular Ehlers-Danlos syndrome by getting your red "ready to wear!" Need some red? We've got you covered. bit.ly/3rSXy5n #VEDS
Find out how VEDS is diagnosed: bit.ly/3K9y3Da #VEDS #RareDisease
Small Fiber Neuropathy is a Common Feature in Hypermobile EDS, Research Finds buff.ly/4b87k4w (fixed link) #EhlersDanlos #EDS #hEDS #Hypermobility #HSD #MedEd #Doctors #NEISvoid #Zebras #CPP #Pain #Fibro
Woops! Good catch, thank you. That just lands on our home page. Try this one: chronicpainpartners.com/small-fiber-ne… #EDS #hEDS #HSD #Hypermobility #NEISvoid #MedEd
Woops! Good catch, thank you. That just lands on our home page. Try this one: chronicpainpartners.com/small-fiber-ne… #EDS #hEDS #HSD #Hypermobility #NEISvoid #MedEd
April's upcoming support groups for the week: Work Support Group with Eliza Jones: Fri, Apr 26, 5-6 PM Fiber Arts with the ED: Sun, Apr 28, 2-3 PM (1 PM Central) For more details and registration, visit buff.ly/3vCJbEd
PT Dr. Elan Schneider on Neuroplasticity and New Approaches to Treat Chronic Pain: buff.ly/3kBpvLz #EhlersDanlosSyndrome #EDS #Hypermobility #HSD #Fibro #Fibromyalgia #PhysicalTherapy #Physio #NEISvoid #Spoonies #MedEd
How To Evaluate The Quality Of EDS Research Papers: A Conversation With Markus Bohn, PhD buff.ly/3LVOnbP #EDS #HSD #hEDS #hypermobility #Science #Medicine #NEISvoid #MedEd #MedTwitter
Popular People With Ehlers-Danlos Syndrome - the list steadily grows... buff.ly/3N5EQz8 #EDS #hEDS #Hypermobility #HSD #Fibro #MS #Spoonies #NEISvoid #Celebrities #ChronicIllness
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).
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.
S Blitshteyn MD, FAAN.. @dysclinic
20K Followers 1K Following Neurologist, Director of #Dysautonomia Clinic, Clinical Associate Professor @Jacobs_Med_UB. Trained @MayoClinic #LongCovid #POTS #EDS, tweets🚫med advice
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.
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.
Candace D. @DiaryofaSickGrl
12K Followers 1K Following Wife. Mother. Dog mom. Chronic illness advocate. 🥄♥️ #hEDS, #MCAS, #POTS, #foodallergies, #cornallergy, etc.
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
Alissa Zingman MD MPH.. @DocZing
5K Followers 1K Following PRISM Spine and Joint, https://t.co/xU10wz4Q5O, Research https://t.co/1kUMpVueSJ, Hypermobility Care, Wife/Mom/CEO/Dancer. Tweets are not medical advice.
Jane Green MBE FCCT c.. @JGjanegreen
6K Followers 4K Following Founder/Chair @SEDSconnective / MBE for Neurodivergence Tissue FELLOW MA Ed. exAHT NED Aut/ADHD/ND ParentCarer / Columnist / Disabled often discombobulated 😶
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]
Professor Lara Bloom @LaraBloom
8K Followers 1K Following President & CEO @TheEDSociety•Prof of Practice Patient Engagement & Global Collaboration•Rare & Chronic Disease Advocate•🏳️🌈Gay•She/Her• Views my own
collagen machine brok.. @chronicallybeee
15K Followers 4K Following enbrel slut | she/they | #FreePalestine | https://t.co/hFC0B2O8QQ
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
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.
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!
Sabeeha Malek @SabeehaMalek
3K Followers 958 Following MIBTP PhD student @Warwick_CMCB in Koester lab & @wingyingchow lab🔬📚🧬 Studying cell biomechanics & collagen/ECM changes in EDS/HSD #biophysics
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.
Renuka Dhinakaran @renudhinakaran
6K Followers 602 Following International Labour Lawyer Patient Advocate for #hEDS #POTS #LongCovid #rheumatoidarthritis #Dysautonomia Focusing on marriage, parenting & chronic illness
Anne Maitland, MD @asktheallergist
2K Followers 291 Following Board certified Allergist-Immunologist Asst. Professor, Mount Sinai School of Medicine
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.
🌟🎃Pumpkin King�.. @hyuksboyfriend
85 Followers 363 Following Demi, transman, unapologetic | My views are mine and critical of the employer I work for 🙃 | Pkmn Sleep: 5730-5289-4500ᕕ( ᐛ )ᕗ
Ton @Earthynerd
766 Followers 4K Following Redheaded carbon-based lifeform of the female variety. Science rocks, rolls, strikes, slips. Fmr USMC brat. Kindness is the best! 🤗😊Opinions are my own 🌻
BeKind2All2 @Kind2All2
34 Followers 464 Following Be kind and accepting and care for your community and the land you live on. ❤️
Joanne Wisely @poppysweeney
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Shutdown Trails Carol.. @ShutdownTC
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Authentique @CLindenboom
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Kari O’Bannon @pupmom123
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Louise Pedersen @lisa232842
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devin norko (they/the.. @mxdevinn
595 Followers 590 Following queer disabled advocate • neurospicy • HoH • writer • lover of art & vulnerability • [email protected] for inquiries! • 🌈✨🌱🧑🏾🦽🤟🏾
Cheryl Reid @cheeerylreid
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Richtosterone 🇵�.. @richmuf1
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ゆるぐら@ポン�.. @yuru2gura2
140 Followers 355 Following 進行性難病持ち/痛み痺れ/麻痺/＃脊髄に傷/#エーラスダンロス症候群/＃EDS/＃全身性関節弛緩症/＃絞扼性神経障害/＃頸椎症性脊髄症/ ＃脊柱側彎症 /＃胸郭出口症候群 /＃ヘルプマーク
MRVN Music - Nurme / .. @CaveJem
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Shutdown Logan River @StopLoganRiver
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lily @nick_hida
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Michael Neuvirth @LetsGoCure
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Auntie Maxine @maxwaterings
2 Followers 1K Following bay. Engineer. retweets/likes are not endorsements!
Zoe @ZoeCa78
1 Followers 30 Following
Ryan @RyanHubbard28
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MaryBeth 💙 @MaryBeth1BR
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Pekka Puupää 🇺�.. @Raichu_pokem0n
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Tracey @Tampatracey
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C S Lark @realCSLark
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DrRhoslynPsych @DrRhoslynPsych
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Billyrubin @Billyrubin49317
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lcarbone @katrocarbone
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Betty Borsalino @BettyBorsalino
293 Followers 990 Following "Nothing is more important than stopping fascism, because fascism will stop us all.” -Fred Hampton
Jude Harris @Judyhar1Harris
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Gelsomina @_GeIsomina
27 Followers 696 Following 𝚞𝚗𝚊 𝚋𝚞𝚏𝚘𝚗𝚊 𝚗𝚘𝚛𝚝𝚎ñ𝚊 𝚌𝚘𝚗 𝚌𝚑𝚒𝚗𝚐𝚘𝚜 𝚍𝚎 𝚙𝚎𝚍𝚘𝚜 𝚎𝚡𝚒𝚜𝚝𝚎𝚗𝚌𝚒𝚊𝚕𝚎𝚜 /
Todd Dages @todddayguess
109 Followers 1K Following U.S. Army combat veteran | proud family man | loving husband | Democrat | community volunteer | Classic VW enthusiast | Tinkerer | 🚙
Kelly D 07 @Daley07Kelly
993 Followers 3K Following I am a mum with EDS, Autism and complex physical and mental health issues. I have an adorable son who is my world. Please help me make a change in medical law.
Kim @Web4Door
916 Followers 800 Following Highly HR & WD c(-r)edentialed, multilingual reply girl. Incurable, not terminal. $Jesus loves you. Will you click like on my LinkedIn pinned post, please?
Kudos The Hero 🐨 @KudosTheHero
248 Followers 313 Following 🚀crypto class '17 🐨koala in suit™ '03 💪kayfabe alive since '92 🤘heavy metal twerking '81 ✈️@travalacom traveler 🇮🇱 #StandWithIsrael 🦓#hEDS 👍I'm ordinary
Susan May @SusanM26284
0 Followers 23 Following
Tiffany Dages @TiffanyDages
880 Followers 3K Following Lifelong vEDS warrior🦓 proud wife of an OIF combat explosives Vet🇺🇸 7th gen hillbilly Floridian🍊foster/adoptive mom 💐hospice volunteer🤗x-stitch🪡Dem💙
Autumn @AutumnRainKat
6 Followers 156 Following SL photographer & creator/designer || Enjoyer of Cats and gaming || Creator of 3D Game Assets || Sticker collector || chronic illness haver.
Colin, @CJ3lions
301 Followers 1K Following love the lake district , fell walks , golf and those 3 lions .. be kind ...
Jane Philipps @janephilipps
380 Followers 238 Following Creating art with code. Previously @Pinterest, @theinformation, @eventbrite.
Jacq van Ruitenburg @jacqvruitenburg
8 Followers 654 Following
🟰 G H O S T 🟰 @veritysmart
520 Followers 492 Following {AuDHD 🌈 | LGBTQ+ 🏳️🌈 | hEDS 🦓 | Vegan+🥑 | 4B | ✌️🍉} I’m not really here, I’m a ghost in a shell (she/they) Trans-Inclusive Feminist 🧔♀️
katrina @katweenien101
237 Followers 513 Following any pronouns. obsessed with my babies and husband.
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).
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.
Dysautonomia Intl. @Dysautonomia
26K Followers 344 Following Dysautonomia International is a 501(c)(3) non-profit that raises funds for research and promotes awareness of disorders of the autonomic nervous system.
S Blitshteyn MD, FAAN.. @dysclinic
20K Followers 1K Following Neurologist, Director of #Dysautonomia Clinic, Clinical Associate Professor @Jacobs_Med_UB. Trained @MayoClinic #LongCovid #POTS #EDS, tweets🚫med advice
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.
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.
Candace D. @DiaryofaSickGrl
12K Followers 1K Following Wife. Mother. Dog mom. Chronic illness advocate. 🥄♥️ #hEDS, #MCAS, #POTS, #foodallergies, #cornallergy, etc.
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
Alissa Zingman MD MPH.. @DocZing
5K Followers 1K Following PRISM Spine and Joint, https://t.co/xU10wz4Q5O, Research https://t.co/1kUMpVueSJ, Hypermobility Care, Wife/Mom/CEO/Dancer. Tweets are not medical advice.
Jane Green MBE FCCT c.. @JGjanegreen
6K Followers 4K Following Founder/Chair @SEDSconnective / MBE for Neurodivergence Tissue FELLOW MA Ed. exAHT NED Aut/ADHD/ND ParentCarer / Columnist / Disabled often discombobulated 😶
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]
Professor Lara Bloom @LaraBloom
8K Followers 1K Following President & CEO @TheEDSociety•Prof of Practice Patient Engagement & Global Collaboration•Rare & Chronic Disease Advocate•🏳️🌈Gay•She/Her• Views my own
collagen machine brok.. @chronicallybeee
15K Followers 4K Following enbrel slut | she/they | #FreePalestine | https://t.co/hFC0B2O8QQ
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
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.
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!
The Tweedy Mutant @the_tweedy
44K Followers 1K Following Corin • PhD studying cats, gender, and domesticities @UBCGeog • literal mutant (EDS, etc.) • AuDHD • crip/queer/trans • he/him • thetweedy on 🦋
Charis Hill | they/th.. @BeingCharisBlog
39K Followers 3K Following Disabled. Queer. Living in forced poverty. Writer, speaker, cat theydy, gardener. Punny.
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.
Sabeeha Malek @SabeehaMalek
3K Followers 958 Following MIBTP PhD student @Warwick_CMCB in Koester lab & @wingyingchow lab🔬📚🧬 Studying cell biomechanics & collagen/ECM changes in EDS/HSD #biophysics
Kristene Richardson @KristenesTweets
417 Followers 2K Following Mom, media sales, social media manager, community engagement, grant writing & fundraising. Rolling with the wheel of life & making friends along the way.
GenomesDAO 🧬 Genom.. @GenomesDAO
18K Followers 8K Following GenomesDAO is a biotech DAO focused on safe, private & auditable monetization of genomic data using DeFi. $GENOME https://t.co/yk8stbb0Bq
devin norko (they/the.. @mxdevinn
595 Followers 590 Following queer disabled advocate • neurospicy • HoH • writer • lover of art & vulnerability • [email protected] for inquiries! • 🌈✨🌱🧑🏾🦽🤟🏾
Michael Neuvirth @LetsGoCure
1K Followers 284 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!
Ben Whybrow @BWhybrowPhysio
1K Followers 80 Following Clinical Communication Skills Educator @UeaMed Specialist Pain Physio for NHS. Creator of @persuadingpts
Sam Ghali, M.D. @EM_RESUS
565K Followers 274 Following ER Doctor | Resuscitation | Airway | Cardiovascular Emergencies | ECGs | Emergency Radiology | Trauma | Critical Care | #FOAMed | Patient Advocate
POTSibilitiesParents @POTSparents
885 Followers 346 Following ~Since 2012, a community of parents sharing strength, support, information, and resources as parents who have children with POTS or other forms of dysautonomia.
Todd Maderis, ND @dr_todd
3K Followers 224 Following Specializing in treating the cause of complex chronic illness #LymeDisease, #MoldIllness, #MCAS #LongCOVID #MECFS #autoimmune
Deekay @DianeK79
86 Followers 608 Following 🦓I watch too much reality tv and talk about chronic illness a lot. EDS POTS MCAS SFN warrior.🦓
GADACanada @AorticDisorders
538 Followers 248 Following Embracing all Genetic Aortic Disorders - Awareness, Support, Education, Research & Resources for Patients, Families, & Health Care Professionals
Mayo Clinic GIM Flori.. @MayoGIMFL
280 Followers 228 Following Official account for the Division of General Internal Medicine, @mayoclinic Florida: The needs of the patient come first.
Open Medicine Foundat.. @OpenmedfCanada
510 Followers 62 Following OMF Canada is fundraising to support open, collaborative research to find treatments and diagnostic markers for ME/CFS and related chronic complex diseases.
GlassesMcDorkface aka.. @glassesdorkface
302 Followers 1K Following Erm, what the spruce? | ♀ | LA trash | 27-yo idiot | #EDS & co 🦓 | #fishtanklive enjoyer | #trishamilitia | MDE never dies
Roger Seheult, MD @RogerSeheult
10K Followers 134 Following 1.5 million on YouTube MedCram 4X Board Certified: IM, Pulm, Sleep, Critical Care Full time Clinician Co-Founder MedCram Professor at Loma Linda Univ and UCR
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1K Followers 2K Following
Alba Azola, MD @AzolaAlba
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plague rat 🐀 @x3r0gxx
8K Followers 7K Following federation of plague rats against forced mass infection 🐀 🐀 🐀 🏴
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235 Followers 141 Following Father, husband, peds rehab doc, Program Director @NorthwellHealth, whiskey enthusiast, tyer of knots, home electric conservationist, shower stall philosopher
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692 Followers 864 Following Laurent Bozec PhD, Professor (Full) @UofTDentistry - Collagen, Dental Biophysics, Nanometrology, Judo & Schnauzer! Always 📐 & Levelled (Opinions are my own)
Alina V @AlinaV_Psy
1K Followers 1K Following Psychiatrist & medical psychotherapist with a special interest in including physical exercise in psychiatric treatment. Mind-body connection. Health(ist). 🏃💪
Dr Laura Noakes @lauranoakes
3K Followers 727 Following Author of the COSIMA UNFORTUNATE series. (@harpercollinsch, book 1 out now!) writer + disabled person. rep: @lydiarsilver at @da_childrens (she/her)
Cyndya Shibao @cyndyashibao1
2K Followers 150 Following I am a physician-scientist, and translational researcher in autonomic disorders and vascular research in African Americans. Tweet=own
Gerri Hastings💙 �.. @Gerbelean
871 Followers 2K Following Living with MS in the best way I can. Open University student. When I was little, girls didn't have ADHD, we were simply bad or lazy.
Mushtaq Bilal, PhD @MushtaqBilalPhD
228K Followers 35 Following I simplify the process of academic writing | Helped 5,000+ become efficient academic writers with AI | Work @SyddanskUni | Join 600 using https://t.co/SKfrXx2V5q
Austin Robert @ar_pnw
2K Followers 491 Following always tired | analyst | turning on the lights to the connection between #longcovid #mecfs #pots #mcas and connective tissue disorder related conditions #eds 💡
Ellie Daniels @EllieDanielsASD
531 Followers 995 Following #AuDHD #Dyspaxia #MECFS #Ehlers-Danlos One of the benefit-claiming poor people that the Tories warned you about. #DisabilityRightsAdvocate #ExpertByExperience
Dr Melanie @MelanieWeckert
10K Followers 10K Following ME/CFS MCAS, POTS. Microbiology (environmental) PhD. Living on Yuin land. Writer poetry, mystery thriller ‘Eagle Bluff.’
Rebecca Ryan @DrRebeccaRyan
1K Followers 1K Following Gastroenterologist & Hepatologist. Disorders of the Gut Brain Axis. Treating Long Covid, POTS, MCAS and hEDS.
Natalie Gibellini, MS.. @NatalieALEXTECH
58 Followers 80 Following Alexander Technique Teacher, East Sussex UK #hypermobility #Parkinsons #backpain #neckpain Former Psychological Therapist, NHS (CBT/IPT)
Denise Milano Sprung @denisesprung
623 Followers 1K Following ❤️ @Lawrence_Sprung 👨👩👦👦 @ZachSprung55 & @jeremy_sprung 📕 @ShhMomsReading 💚Chair @MilanoFund ⭐️Dir Marketing @mitlinfinancial #hockeymom #Disneymom
Rebecca Yarros @RebeccaYarros
22K Followers 2K Following #1 New York Times, WSJ, Sunday Times Bestselling Author. Pres One October—nonprofit for kids in foster care. #milspouse #ehlersdanlos She/Her. Rep: Louise Fury
The Inclusion Movemen.. @theinclusionMO
344 Followers 1K Following Committed to developing the awareness and understanding of disability around the world. Enquiries: [email protected]
Sarah Clark @sarah_clark_84
984 Followers 3K Following Patient Expert. Studying MSc Neuropsychology; Writer; Photographer; Yogi; Aspiring Floating Researcher. ❤️🐱#hEDS #MALS #MCAS #Dysautonomia #LateDiagnosedAutism
Lawrence Alexander �.. @LawrenceAlxndr
126 Followers 403 Following My account for chronic illness and disability knowledge and networking. Tech/journalism: @LawrenceA_UK
Kathryn @kadamssl
7K Followers 841 Following Past-Chair of the Women’s Caucus at CASWE-ACFTS, MSW, Long COVID research, therapist, equity advocate, intersectional feminist, mom. Tweets my own.
The Ace Couple @The_Ace_Couple
7K Followers 2K Following Hosted by "insults to humanity and nature" Courtney & Royce New Every Wednesday
Sarah Nuttall @selvascura
45 Followers 156 Following I am an autistic woman with co-morbid POTS and EDS. My special interests are writing, art and autism.
Keratoconus Group @KeratoconusGRP
5K Followers 478 Following A safe & supportive community for people living with keratoconus and the people who care for them. (Est. 2007) Send stories/photos to [email protected]
Ciara 🍉 🌈Toitū.. @CiaraArmstrong_
1K Followers 778 Following I do swears. Chronically ill with Ehlers-Danlos Syndrome. She/Her #ToitūTeTiriti #CrossStitcher #FreePalestine
Sibylle Dahrendorf �.. @sibylle_berlin
6K Followers 3K Following Once a filmmaker now stuck in horizontal hell | #SmallFiber #BigPain #POTS #MCAS #CCI #Lyme #FQToxicity #ME I Stop denial of #ComplexChronicIllnesses I
Karen Gray 💙 @KGphysio339
143 Followers 611 Following Physiotherapist @ NHS. All views are my own BSc (Hons) Sports Rehab & Injury Prevention
Australian POTS Found.. @AustralianPots
311 Followers 123 Following Australian POTS Foundation│Non Profit Organisation. We strive to improve awareness, research and education for those with POTS
Stacy @StacyLinnea22
87 Followers 571 Following Mom of 8, Aaron's wife, friend of creatures and sunshine, PJ fan forever, EDS Zebra, neurodivergent AF
Aurora @spacehurricanes
1K Followers 2K Following Swirling through space-time. she/her #neisvoid same @ on the other blue app.
Ciara Micks @CiaraMicks
88 Followers 334 Following I’m 22, I live with Ehlers Danlos Syndrome. My aim is to share info & spread awareness about this not so rare condition
PoisonPinkDaisy #CEP .. @PoisonPinkDaisy
2K Followers 4K Following Adventurer of Art, Poetry, Music, Nature, Life, A Thinker, Seeker of Knowledge & Muser of the Complexities of Being, An Obsessive Observer & Fairy Spotter!Fantastically excited to be hosting Dr Eccles on 19th May 2024, for a webinar talk on the important connections between long Covid and Hypermobility (GJH). ⬇️
Connections between #LongCovid & #Hypermobility members only webinar and Patron @BendyBrain 🗓️19th May ⏰from 3.30pm BST 💻online via Zoom First join as a member here: tinyurl.com/yabekyzu 👉Book here: tinyurl.com/5n7dbtfv #EDS #HSD #HypermobilityAwareness #dizzy
Even more concerning is the increased recognition of the overlap of connective tissue disorders with ME/CFS. The use of GET in EDS/HSD patients can cause irreparable harm. There is no place for GET in any of these patient populations.
Seems like Australian GPs are still bonafide members of the GET cult. They have apparently learned nothing in recent years and continue to parrot nonsense--and even cite the fraudulent PACE trial as "evidence" for something. virology.ws/2024/04/25/tri…
POTS is very real and an invisible illness, meaning there are many things you cannot see. You can’t see the tachycardia. You can’t see the brain fog and dizziness from the lack of blood to our head. You can’t see the vision dysfunction. You can’t see the dizziness. You can’t…
@EDSawareness1 @H2OhTwist as far as i can see, NORD has no assistance programs for EDS patients currently. also, from experience, SSA drags their feet when it comes to EDS. might be useful to put a disclaimer on the SSI/SSDI portion regarding potential years-long waits
When Else to Suspect Ehlers-Danlos Syndrome or #HSD buff.ly/2JLs8D8 #EDS #HMS #Fibromyalgia #MedEd #Doctors #Spoonies #Hypermobility #Zebras #MedTwitter #NEISvoid #Autistic #Autism #ADHD #AuDHD
“It wasn’t until I personally became #disabled that I truly grasped the concept of #ableism..I found myself belonging to one of the largest groups frequently subjected to #prejudice": buff.ly/3Q1KiEB from @CreakyJoints @chroniceileen #discrimination #ChronicIllness
But nobody really knows how to treat it, and it’s a common feature of non hypermobile people too. For some it’s absolutely dreadful yet for others it’s a benign clinical feature. More research needed.
Small Fiber Neuropathy is a Common Feature in Hypermobile EDS, Research Finds: buff.ly/3k93Eut #EhlersDanlosSyndrome #EhlersDanlos #Hypermobility #HSD #hEDS #NEISvoid #MedEd #FOAMed #Doctors #Medicine
Neuroplasticity is the future for those who have chronic pain. It works but takes time, patience and you need to be in the right state of mind. It's worth giving it a try.
PT Dr. Elan Schneider on Neuroplasticity and New Approaches to Treat Chronic Pain: buff.ly/3kBpvLz #EhlersDanlosSyndrome #EDS #Hypermobility #HSD #Fibro #Fibromyalgia #PhysicalTherapy #Physio #NEISvoid #Spoonies #MedEd
Some of the worst things I’ve noticed about chronic illness are. Knowing there is no cure Unsolicited advice No one really understanding Faking being okay Feeling unreliable Feeling awful 24/7
“97% kids excluded from school have a special educational need or disability” Not a surprise to me as I have been warning about the explained or misunderstood issues for some years #neurodivergence and #hypermobility #EBSA See our paper and I’m ex national #autistic ADHD cred.…
"... a disaster most of which can be prevented" Former Children's Commissioner for England, Anne Longfield, says primary school children excluded because of their special educational need have been failed. Tom Bennett advisor to the Department for Education disagrees.
Thanks for interviewing me, @NeurologyToday, on a new study of IVIG in #POTS by Dr. Vernino. More work needs to be done on immunotherapy in @Dysautonomia: hopefully, the @NIH RECOVER trial of IVIG in #LongCovid would give us better data. 🧠🫀 #NeuroTwitter @AANmember #AANAM
Via #AANAM: Intravenous immunoglobulin had no significant benefit compared with IV albumin for treating presumed autoimmune #PosturalTachycardiaSyndrome: bit.ly/3JhfADt #NeuroTwitter #POTS @AANmember @UTSWNeurology @dysclinic @MUSOMWV
Great list! And I'm sure there are more they can add. Let them know...
Check out our newly curated list of EDS Advocates to follow on social media as of February 2024: buff.ly/3uwrYvN Let us know if we've overlooked any #EDS advocates, and we'll add them to the list. #EhlersDanlos #Hypermobility #hEDS #HSD #NEISvoid #Spoonies #Zebras
Everyone: stretch marks are normal, and occur in ALL genders, actually, and can be a sign of an underlying connective tissue disorder like #EDS or #HSD. I got some at 12, while super skinny. 🙄 #MedEd
Why do we keep asking men what their thoughts on women’s bodies are???? Like aren’t you TIRED. I’m TIRED. Like why can’t you just stop. A lot give their unsolicited opinions without asking usually!!! Who’s ‘approval’ are you after like really 🥲😭
@SjogrenEurope Sjogrens patients often state the most stressful thing about having the disease is not being able to find knowledgeable clinicians. This is a common theme in patient support groups. One frustrated patient said, “I just want to find a Doctor Who thinks that Sjogren’s is real!”
Delighted to have been asked to speak @ukaan_org ADHD conference #hypermobility #EDS #dysautonomia #inflammation. Exciting @BSMSMedSchool research insights to share
Peeling the Diagnostic Onion - is your doctor falling for too many red herrings and missing your #hypermobility? buff.ly/36Q0Lnu #HSD #EDS #hEDS #EhlersDanlos #pain #MedEd #MedTwitter #fibromyalgia #fibro #zebras #NEISvoid #autistic #ADHD
@singingsox @EDSawareness1 yes! not rare, just rarely diagnosed.
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