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Emily Johnson

@emily_rj@disabled.social

mastodon 4.6.5

Iowa. Digital journalism. Design, news and book edits, linguistics, data, tech. Medical + academic research. Disability in news consults.📚🌈 ☕️ 🐈

Moderator at disabled.social. Ambulatory mobility aid user.

#CripTheVote #DisabilityJustice #DisabilityRights #A11y
#EDS #POTS #MCAS #MECFS #Mito #ADHD #ActuallyAustistic #CPP #MillionsMissing #pwME and more

GoFundMe: https://www.gofundme.com/f/help-emily-get-medical-care

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14 Posts

Joined November 11, 2022

@emily_rj

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Bluesky:

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Posts

Emily Johnson @emily_rj@disabled.social · Aug 07, 2026

It’s so awful to have Chiari, IH, CSF leaks, CCI, AAO and AAI (slow internal decapitation)

It’s very severe, I can feel my head popping off my neck and try to pop it back in, so painful

My neurosurgery follow-up is soon, please donate and share: https://www.gofundme.com/f/help-emily-get-medical-care

Emily Johnson @emily_rj@disabled.social · Jul 31, 2026

Updated my GoFundMe, please share and comment, need more donations https://www.gofundme.com/f/help-emily-get-medical-care

Highlights: may need more neurosurgery trips and surgeries due to vein issues, stage 3 gastroparesis aka gastric failure, stage dyssynergic defecation, more severe sleep data confirmed

Emily Johnson @emily_rj@disabled.social · Jul 03, 2026

Martha Wells writing a character’s inner monologue using parentheses inside of parentheses, as one does 💅🏼

Emily Johnson @emily_rj@disabled.social · Jun 30, 2026

John Ferman, who founded of Chronic Pain Partners/EDS Awareness in 2011, passed away November 2025

EDS patient and filmmaker @karinasturm@bird.makeup made this documentary short to honor John’s legacy of advocacy (in honor of his first wife, who passed away due to #EDS complications):

https://youtu.be/vLar9uhx0NE

1/2

Emily Johnson @emily_rj@disabled.social · Jun 27, 2026

If you have #POTS and/or other types of dysautonomia and you take Corlanor aka Ivabradine, there’s a recall, check your pills: https://www.eatingwell.com/heart-kidney-medication-recalled-nationwide-12007424

Emily Johnson @emily_rj@disabled.social · Jun 25, 2026

Basic journalism rule: Don’t say anything in private you don’t want made public

Defamation per se isn’t protected by the First Amendment

Emily Johnson @emily_rj@disabled.social · Jun 21, 2026

If you’re a “journalist” criticizing my GFM, you could bother to read it *before* you claim it covers care for only one doctor, as it covers years of several medical trips and care across dozens of specialists related to brain/spine issues — but I know only real journalists would

Emily Johnson @emily_rj@disabled.social · Jun 11, 2026

I’m either too sick to post or too sick to do much besides post, that is part of dynamic disabilities, my existence or non-existence online is not evidence of wellness and usually evidence of worse sympyoms, thank you ✨

Emily Johnson @emily_rj@disabled.social · Jun 10, 2026

“Ok body the specialist diagnosed me with a new chronic infection that’s been raging and misdiagnosed for years, let’s get these treatments started!”

#MCAS: I hear you but I’m going to respond with severe contact dermatitis because what if YOU are the chronic infection trying to fool me?

Emily Johnson @emily_rj@disabled.social · Jun 06, 2026

Exposure therapy for people with food allergies and food intolerances has killed and nearly killed so many kids and adults

Anyone proposing exposure therapy as a journalist, researcher, clinician is oppositional to ethical and appropriate medical expertise in these fields

Emily Johnson @emily_rj@disabled.social · Apr 16, 2026

In the hospital for an extra day having a very hard time, if anyone could please share my neurosurgery fundraiser even if you can’t donate so more people see it, appreciate you, thank you

Will update when I know more https://www.gofundme.com/f/help-emily-get-medical-care

Emily Johnson @emily_rj@disabled.social · Mar 31, 2026

Before another well-meaning, good doctor says “there just isn’t that much evidence tying Covid to this condition yet” it would be great if they checked the Covid lit library to see if 1,000+ research papers of such evidence exists

Misinfo helps no one https://www.ncbi.nlm.nih.gov/research/coronavirus/

Emily Johnson @emily_rj@disabled.social · Mar 25, 2026

If you missed the live link for Alice Wong’s Celebration of Life reception today, you can watch the recording here, thanks to the San Francisco Disability Culture Center: https://www.youtube.com/live/i2dj4WABIeY?si=ScgiSTbh_9jlJYGT

Emily Johnson @emily_rj@disabled.social · Jan 14, 2026

Long Covid clinics state by state, updated as of April 2025

This is a spreadsheet shared by journalist Emma Smith and created by a Long Covid org, she recently wrote a Sick Times article about many Long Covid clinics closing and stranding patients

Some of the clinics on this spreadsheet have since closed, but I wanted to share this should it be useful for people here to contact listed clinics in their state and surrounding states for care

https://docs.google.com/spreadsheets/u/0/d/1ODmvKyCdMUNeKbn7UHmPVD6wuZMCJ87H9yh1yloMT8I/htmlview#gid=943772212

Emily Johnson

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