I think about how disability is different for Black people than for white people. Black lives in general are only deemed acceptable if we're productive. So when we're unable to work or not as productive. We're often discarded and it's been that way since slavery.

Catch Jan on Episode 52: What is this mysterious “Ehlers-Danlos syndrome”? Explore when to suspect, why it's so poorly recognized, and how to go about getting diagnosed (if you can) via Lucas
buff.ly/313YPWj

#EDS #HSD #hEDS #MedEd #doctors #nurses #FOAMed #NEISvoid

limbostate Laura Haggarty Oh TWIST! This is an overview of what happened to me with my attempts at trying to conduct research in nutrition in hypermobile Ehlers-Danlos Syndrome (hEDS)

Differences in manifestations of Marfan syndrome, Ehlers-Danlos syndrome and Loeys-Dietz syndrome 2017:
buff.ly/2G4Rz3u

#EDS #LDS #Mafran #CTD #meded #FOAMed #medicine #doctors #genetics

I diagnose #POTS every emergency shift, a condition that I didn’t know existed before two years ago.

MDs/PAs/NPs: do orthostatic HR for everyone with unexplained tachycardia.

#POTS #LongCOVID

.Sami Schalk shares with us why the @rampyourvoice! Conference is overdue for the Black #disabled community.

instagram.com/reel/C7ZQzhWxb…

Catch it LIVE! on YouTube - June 7th.

Register ➡️: bit.ly/RYVsignup

#DisabilityRightsMatter  
#InclusiveAdvocacy  
#RYVConference2024

Autism and ADHD absolutely can be (and are) disabling for many people.

The “superpower” (etc) things actually will harm ALL Autistic/ADHD folk.

It is exactly what people want us to say, because it means they don’t have to give any support or recognise it as a disability.

THISSSS!

Every single time I post anything too, you can refer to YOUR OWN stuff any way you’d like

I’m always referring to outsiders & how they should talk about it bc they don’t get a say, outsiders never get a say

I will be speaking at the @rampyourvoice Conference on June 7 and it will be virtual. I hope y'all can join and learn about the importance of black disability advocacy. /1

#greenscreen #RampYourVoice #RampYourVoice Conf #RYVconf #RYCConference2024

#Care4Complex includes not forcing Dysautonomia + POTS patients to sit up for endless hours in bright, loud, ERs. It makes us so very sick, and is a big reason I don’t seek ER care when I really should.

Reached $90, thank you! Need $650 for rent by 11AM- 16 HR TIME CRUNCH!

Multiply disabled- can't survive the street! #PleaseShare , and help if you can? Anything counts.

More details below!

#MutualAidRequest
#DisabilityCrowdFund
#URGENT

Please share widely!
Please help our beloved Tinu, Empress of Twerk, Thirst of My Line consistently access chemo & other medical care!
No one should be having to go through all of this to live!
Tinu always does so much for others, even when she feels her worst!
Please share if you can't help.
#ForTinu
💖❤️❤️🦋🌈🌟

I am happy to be speaking at the Ramp Your Voice Conference and learn from amazing badass black disabled activists who will be speaking as well. #RampYourVoice #RYVConf2024 #RYVConference2024 #RampYourVoice Conf

FYI we are working on collating this series of articles either into an eBook or onto a single page soon. More to come! #EDS #hEDS #HSD #Hypermobility #Zebras #MedicalTrauma #NEISvoid #Spoonies

Medical trauma
Warning

In case you missed this paper it is about traumatisation of people with hEDS HSD or even symptomatic hypermobility but disbelieved by those in privileged positions such as medical health care practitioners.

An important paper and for any researchers

Most people understand that not taking meds correctly, lack of sleep, and stress are #seizure triggers. -- Is there something unusual that triggers your seizures? #EpilepsyAwareness

More on seizure triggers:
brainablaze.com/the-brain-abla…

Pelvic Organ Prolapse is highly co-occurring in hypermobile patients with any form of connective tissue disorders, including the #EDS #HSD and #MarfanSyndrome . Find support here:
buff.ly/2WXg34b
#spoonie #Spoonies #zebras #POP #hEDS #women #health #NEISvoid

We still have a few days of EDS Awareness Month left and for Chronic Pain Partners' newsletter, I have compiled a list of EDS books one should read.

chronicpainpartners.com/books-on-ehler…

#Books #EDSBooks #EDSAwareness #EhlersDanlosSyndrome #MCAS #Dysautonomia

'My phone was not allowed in the room b/c of..infection-control ..my caregiver..could not join me.
I wanted to...tell ppl how much pain I was in. If only these..providers could sense the terror of not having your AAC.. for 2hrs or.. a minute.. left me shaken & vulnerable.'

No, I struggle to communicate. I have this struggle even with other autistic folks. Sometimes brain not make words good.