CSF Leak Matters
There is dignity in a diagnosis.
Once a research & clinical OD and international speaker, now 10+ yrs bed-bound by spontaneous Spinal Fluid Leaks.
I miss life and life misses me.
@siac1.bsky.social
Counselling Psychologist, existentialist, writer, mother, CSF leaker, TM sufferer, proud Scot - independence is normal and monarchy is not. No DMs please unless we know each other. If you ignore this polite request and DM me anyway I will block you.
@lesleymac.bsky.social
Social justice warrior, Scottish Independence, I want my EU citizenship back. She/her tree hugger, in the words of the great Mr Weller once a mod always a mod. No DM's please Anti-racist Anti-fascist Trans Ally free palestine Woke As Fuck
@genx.swifties.social
GenX Swiftie✨ Cat Mom ✨Boy Mom ✨Tayvis stan 💙Midnights, Folklore girlie🩶 Chronic Pain warrior
@ronniemac55.bsky.social
Proud Nova Scotian🦞/Married to a Mainer🇺🇸/Cancer Survivor/LGBTQ Ally🌈/ Liberal AF/Free Thinker/ Twitter Escapee/Trump Despiser/CSF Leaker www.spinalcsfleakcanada.ca https://spinalcsfleak.org
@pmkmann.bsky.social
CSF leaker since 2015. Personal researcher into CSF leak cause, detection and treatment. My profile picture is from when I was a healthy human being.
@carrieakingfw.bsky.social
Avid reader and occasional writer. Erstwhile attorney. Music lover and lyric rememberer. Accidental #spinalcsfleak, #hEDS, #MCAS patient and advocate.
@alexkanefsky.bsky.social
Writer, theatre-maker, bread enthusiast. Book-writer: Cable Street. AD of Paper Balloon Theatre. Living/working with chronic illness OUFC 💛 AlexKanefsky.com JBR Creative Management
@voltroner.bsky.social
Documentary Editor: THE ROMANTICS / BOYS STATE / THE BLOOD IS AT THE DOORSTEP / TRUTH TO POWER Documentary Director: THE 414S MKEHOME
@andibuchanan.bsky.social
NYT bestselling author. Latest book: FIVE-PART INVENTION. Finalist, 2019 PEN E.O. Wilson Award for Literary Science Writing, for THE BEGINNING OF EVERYTHING. andibuchanan.com
@andrewcallenmd.bsky.social
Associate Professor of Neuroradiology- Director, CU CSF Leak Program - University of Colorado Anschutz Medical Campus
@legalnomads.com
Once a lawyer, then a travel writer. Now disabled, writing about curiosity, health, & loss. Travel writing, & celiac translation cards: legalnomads.com The best things I read each month: jodiettenberg.substack.com MCAS & health: jodiettenberg.com
@caseyalbin.bsky.social
Neurointensivist @EmoryNeuroCrit | @ContinuumAAN media AE | Co-Author Acute Neurology Survival Guide | Passionate about #FOAMncc & acute neurology
@isaacbrodsky.com
@judyintheskynet.bsky.social
Neo-artist & ex researcher with severe #MECFS, very severe #MCAS, #CSFleak & more. Co-founder of blackferkstudio.com (art & science for ME/CFS). 💘 for piglets. PhD in social sciences. 🇦🇹. Insta & Masto: judyintheskynet https://linktr.ee/Judyintheskynet
@kerenleah.bsky.social
💧Awareness of Spinal CSF Leak & Spontaneous Intracranial Hypotension • Medical content volunteer at CSF Leak UK • Owner Ivy Wedding Cars & Nostell Chauffeur Co • F1, motorsport, hiking, nature 🌿
@judygadde.bsky.social
Pediatric Neuroradiologist. #MedEd enthusiast. Animal lover. #MHPE student. Founder of RadSIG.
@brainscandan.bsky.social
Consultant neuroradiologist, Cambridge, UK Specialist interest in SIH and spinal CSF leaks #RadSky #Neurorad #MedSky
@neuroradlal.bsky.social
Neuroradiologist | Educationalist | Kings College, Guys & St Thomas’s Hospitals | Love the brain/spine/nerves/CSF(+leaks). Show up. Be of value. Make an impact.
@markhisted.org
How brain neural nets do computations to process info. Bearish on AI taking over the world, bullish on neuro advances via understanding AI. Pers. views. I tag neuro posts w/ #neuroscience /🧪
@genomeresearch.bsky.social
A leading peer-reviewed genomics journal. https://genome.cshlp.org Submit: http://submit.genome.org
@bmj.com
The BMJ is patient centred, evidence based, and independent. Help us improve the health of our world with the best science, journalism, education, and comment.
@spinalcsfleak.org
We are a United States 501(c)3 nonprofit organization that helps raise awareness, educate, and support research on intracranial hypotension and spinal cerebrospinal fluid (CSF) leaks. spinalcsfleak.org
@amyhoy.bsky.social
- OG web - design - hci - reading - writing - saas biz - edu biz - photos - cats - desert - she
@chronicchannel.bsky.social
Youtube Channel covering Chronic Illness, Universal Basic Income and Air Quality. https://www.youtube.com/@ChronicIllnessChannel Clean The Air http://bit.ly/CleanTheAirUK
@migrainechat.bsky.social
Education researcher turned migraine advocate #MigraineChat host Vermont maple syrup aficionado 🚫 Unsolicited advice She/Her/Dr (PhD kind) Header: Dinosaurcouch MigraineChat Resources & Discord: https://campsite.bio/migrainechat MC feed/starter pack👇🏻
@slooterman.bsky.social
Disabled disability and aging reporter at The 19th. Opinions are my own. Signal: slooterman.18 Email: sluterman at 19thnews dot org On parental leave. Will be back at work July 30.
@ozfish.bsky.social
Retired maths teacher. ME/CFS 35 years. Volunteer staff member on Science for ME international forum, www.s4me.info
@lindsaybaran.bsky.social
Disability & healthcare activist/ policy nerd/ researcher on indefinite pause Chronically ill (EDS &co, ME/LC) & HoH Chicago She/her
@millionsmissingswe.bsky.social
#MillionsMissing is a global campaign for ME health equality! https://meaction.net #MillionsMissingSweden #MEAction #MECFS #pwME #svmed #MEAwarenessHour
@melindaiscomplex.bsky.social
My body has given up but I haven't... ME/CFS Patient Leader & Complex-Chronic Disease Advocate (on hiatus). Co-founder #MEAction Maryland. Bed-tethered disabled by severe ME & LC & comorbids. Orioles/Ravens/Caps fan. She/her
@compulsiveobserver.bsky.social
Installation artist. Perfume fanatic. Chronically ill. Concordia University PhD student(disability studies + performance studies + practice-based research.) Ex jammer, current failure. She/her Montréaler in Edmonton. https://linktr.ee/ChloeLum
@fkmckenzie.bsky.social
optimist. kiwi. spoonie. helping people design for humans. often in healthcare. musings on behaviour, leadership, tech, data, faith, plants, health. she/her.
@exceedhergrasp1.bsky.social
Scientific Director, #MEAction Stanford Med Université de Montréal TIME100 Health 2024 #ME, #EDS, #POTS, #LongCOVID Views my own exceedhergrasp1 on Twitter
@meactnet.bsky.social
A global network of people empowering one another to fight for equity for myalgic encephalomyelitis. Home of the #MillionsMissing linktr.ee/meactnet #pwME #MyalgicEncephalomyelitis #LongCovid #MECFS #ChronicIllness #DisabilityJustice
@artistswitheds.bsky.social
A community for artists and creatives with Ehlers Danlos syndrome. This is a space to share tips, tricks and support for living a creative life with #EDS 🦓
@julierehmeyer.bsky.social
Author of Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand. I mostly write about complex chronic illness and math. Bylines in NYT, WashPost, Discover, Wired, Slate, Stat News, Science News, lots more. She/her.