Mastodawn

#runnersofmastodon #running #runninggrannies #alienrunners #neuropathy #CIDP #raredisease #IVIG
Hello my dear peeps, an update on my health. Although clinically there is a lot of improvement the ENMG didn’t show any progress. So, I have mixed feelings. No treatment coming up, unless I deteriorate. Anyway, I’m slowly building up the 🏃🏼‍♀️. I’m at 4x2’ with 2’ walking in between. Last year I planned to run the Rotterdam marathon to 🥳 my 60th birthday. I’m 60 now, Garmin thinks I’m 20 🤭.

Cam Mar 27

I just saw that and darn it’s right. So many times I’ve been told I’m exaggerating and its variations. I’ve not been accused of looking happy in a long time, though.
#chronicPain #disability #humor #invisibleIllness #meme #rareDisease

Christian Gebhard Mar 26

I’ll attend the #EuroNDD Workshop in Warsaw in April. Anyone around the Fediverse going there as well? —> let’s connect!

I’m looking forward to present our work at https://www.findme2care.de AND hear about all the other projects.

Also: I’ll be co-hosting an educational session and roundtable discussion titled „Building Patient Registries under the GDPR – The Good, the Bad and the Ugly“ —> there are a few seats left for conference attendees!

#humangenetics #genetics #RareDiseases #RareDisease #ERN #ERNIthaca #patientregistry

Dr. Ashley | Panicked Foodie Mar 26

New video posted on The Panicked Diaries Channel!

Kind of a silly topic I suppose, but a lot of us bedridden/bedbound folks have plushies to keep us company.

I go over different collections, and which ones I think are the best!

"Different Stuffed Animal Collections for Bedbound and Bedridden People"

#Disabled
#Bedbound
#Bedridden
#ChronicIllness
#RareDisease

https://youtube.com/watch?v=MG4rKjbNJi4&si=Vmeiwl4ZU8q_bYYP

Different Stuffed Animal Collections for Bedbound and Bedridden People

YouTube

Thekla Kluttig Mar 21

Morgen, 22.03., vor vier Jahren konnte ich das erste Mal wieder ein Bein ein wenig bewegen - über zwei Monate nach einer schweren #GBS-Erkrankung.
Die Informationen des Selbsthilfevereins haben mir während der langen Genesung sehr geholfen:
#GuillainBarreSyndrom #Polyneuropathie #Barrierefreiheit #raredisease
https://gbs-selbsthilfe.org/

Department of Communications Mar 19

Stiff-Person Spectrum Disorders are rare autoimmune conditions that cause muscle stiffness, painful spasms, and exaggerated startle responses. Early diagnosis matters. 💙

#SPSD #AutoimmuneNeurology #RareDisease #Telehealth #Neurology

Dr. Ashley | Panicked Foodie Mar 19

Day 32 of me relearning how to walk! I stepped foot on the treadmill for the first time.

I also give some tips on how to incorporate this into your rehabilitation routine, if you are also relearning how to walk!

#Disabled
#RareDisease

https://youtu.be/J4DZAVtJqX4?si=zWOSatX_8JmR-eOK

Day 32 of Relearning How to Walk: Walking on a Treadmill

YouTube

Nairamtrab 🍋🇪🇺🇺🇦🏳️‍⚧️🏳️‍🌈Mar 14

#runnersofmastodon #running #runninggrannies #alienrunners #neuropathy #CIDP #polyradiculopathy #raredisease #IVIG
Hello my dear peeps, I had my 2nd cycle of immunoglobulines the last week of Feb. and I can feel my feet! 🥳 It is not normal yet, but so much better. I started very carefully jogging a little bit during my walks (5x1’1’). Physiotherapist is a bit worried, warned to take my phone and turn on the location service. End of March another ENMG to see how things are.

Audubon Ballroon (he/him)Mar 3

Doctors say that old people are full of regrets.

I'm trying not to have regrets.

I tend not to watch things like mountain climbing where abled bodied people achieve such bc I start to have feelings of regret.

I have a disability - autism - so I'm happy to watch productions where people overcome their conditions or disabilities.

#raredisease #pwd #disabled #blackdisabled #blackpwd #neurodivergent #blackneurodivergent #blackautistic #blackmastodon

clarkiestar Mar 1

“The growing role of parents as advocates and innovators, the case for a national rare disease champion, and why a more joined-up approach across government, regulators, industry and charities is essential to delivering faster diagnoses and access to life-changing therapies.”

#RareDiseaseDay #raredisease #chronicillness

https://pca.st/episode/cb7574f5-dd62-41ba-986d-686370acc4d6