EDS & co
Ehlers Danlos Syndrome and related topics.
Created by
@chromatowski.bsky.social
@himmatb.bsky.social
Writer + editor on pause due to Long Covid/vaccine. Very severe and fully bedbound. ME/CFS | POTS | hEDS. he/him
@nlizaki.bsky.social
#MEActionNetwork health activist. Patient, project manager, translator & polyglot. ✊🏾 #Stoic #WoC @NLizaki & @SaveLizNevra on Twitter. #MyalgicEncephalomyelitis since 6. 28 now. #PMDD #hEDS #POTS #MCAS #LongCovid
@rachelriggs.bsky.social
Author of IN GOOD HEALTH: Uncomplicated, Allergen-Aware Recipes For a Nourished Life instagram.com/the.rachel.riggs #EDS #MECFS #Food #paleo #glutenfree #dairyfree
@daniellemors.bsky.social
Audiobook Narrator. She/her. hEDS and ME/CFS patient and advocate. Please wear a mask.
@akaemilo.bsky.social
Derailed by #MCAS #hEDS #MEcfs #Dysautonomia #GravesDisease Animals deserve better. Missing Ireland. Writer at ElizabethMilo.com #MaskUp
@carolinechristian.bsky.social
Professor #ssu, writer, mother disabled by #hEDS #MECFS #LC; I write a blog called Frozen in Amber about the science of and lived experience w/ #hEDS #MECFS #LC | chronicallycaroline.com
@dsavannah.bsky.social
~ Life stolen by MEcfs-hEDS-fibro-POTS-&c; FT sick since 12/2014 ~ #LiveInBedButIAintDead ~ When brain & body behave: Chronic Illness Advocate ~ Discworldian, Browncoat ~🐱(x3)🐢💐🌻🌷📸📚🖼️ ~ she / her ~ Love Is Love ❤️💚🧡💛🩵💙💜🤎🖤🩶🤍🩷 https://linktr.ee/thedsavannah
@drrebeccaryan.bsky.social
Love everything Gut Brain Axis related. Gastroenterologist POTS, MCAS, hEDS, Long Covid, VCS
@taraf.bsky.social
Health Equity & Translational health researcher | Improving healthcare services & experiences for marginalized | Part-time research associate | Renegade Research volunteer Tampa, FL 😷🌈☮️📊📚🫂🩼♿️🗣️ #Disabled #LongCovid #PostVax #MECFS #POTS #hEDS #Lyme #AuDHD
@mayalongcovid.bsky.social
RWJF ClinicalScholars Alum, School Nurse, Scientific Diver/ocean lover bedridden by severe #LongCovid 3/2020 & #MECFS, #POTS, #MCAS #hEDS #Chiari. #healthequity
@shellchat.bsky.social
Reformed journo/editor, now working in health comms. Fighter of injustice in all its forms. Advocate for better research & support for ppl w uninvited friends POTS, ME/CFS, MCAS, LC, EDS, SjD, AnkSp plus other misunderstood AI conditions.
@mecfshawaii.bsky.social
Patient Advocate + Caregiver to pwME/Septad 🦓🦒 #ME #EDS #POTS #MCAS #LongCOVID #MEActionHawaii
@steigerecon.bsky.social
Assistant professor of economics on medical leave from Northeastern University; macroeconomics, growth and development. Severely ill with MCAS/POTS/EDS/ME. Catholic convert who loves the balance of faith and reason. Native Oregonian.
@itswhitneywitch.bsky.social
Disability Justice Living with ME, EDS, POTS, MCAS, vascular compressions, spinal comorbidities & more Ambulatory wheelchair user Cozy gamer, lazy gardener, hopeful baker
@exceedhergrasp1.bsky.social
Scientific Director, #MEAction Stanford Med Université de Montréal TIME100 Health 2024 #ME, #EDS, #POTS, #LongCOVID Views my own exceedhergrasp1 on Twitter
@chromatowski.bsky.social
This account will prob be about biomed research—complex chronic illnesses and Covid—w/some material on disability justice and organizing. ME ‘05, LC ‘23, many of their friends along the way. Very severe (FUNCAP 0.8), thanks for your patience.