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nixinix.bsky.social
@nixinix.bsky.social
85 followers 190 following 7 posts
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Reposted
broadwaybabyto.bsky.social
If you’re struggling to disconnect and protect your peace right now… my article on radical rest might help.

When you’re chronically ill you must learn to rest. You either do it voluntarily, or the body will find a way to force you.

This skill will be extra important in the coming weeks:
It's Time to Throw Away the 'Coulda, Woulda, Shouldas' and Practice Radical Rest
When you're chronically ill you can't push your body the way non disabled people do. You have to learn to rest. There's few words more damaging to us than the 'coulda, woulda, shouldas'
www.disabledginger.com
January 22, 2025 at 4:14 AM
Reposted
legalnomads.com
New research article by @ruhoy.bsky.social & others finds that people w/ hEDS have a higher frequency of unique musculoskeletal comorbidities that require surgical intervention, as well as a higher frequency of concurrent conditions (MCAS, gastroparesis, POTS etc)
www.frontiersin.org/journals/neu...
January 22, 2025 at 6:52 PM
Reposted
chronicillness.bsky.social
chronically ill
#chronicallyill #chronicillness #autoimmune
chronically ill people tend to downplay their symptoms because being honest about them tends to weird people out.
December 11, 2024 at 12:42 AM
Reposted
chronicillness.bsky.social
chronic illness flares
#chronicillness #chronicallyill #chronicillnessmemes
for every action there is an equal and opposite health flare
December 9, 2024 at 5:05 PM
Reposted
autismadvocate.co.uk
A Great starter pack for us Zebras
#Hypermobility
#hEDS
#HypermobileEhlersDanlos
#PoTS #Dysautonomia

go.bsky.app/GcGzAae
November 18, 2024 at 12:54 PM
Reposted
ohtwist.bsky.social

The @Norrislab at MUSC unveiled their genetic finding in June 2024 behind some #hEDS patients: a Kallikrein gene. (Not a collegen defect!) Still needs peer review, but it may explain some comorbidities too:

buff.ly/4cj40El

#EDS #HSD #MCAS #Genetics #NEISvoid #Zebras
Norris Lab Finds HEDS Gene: Kallikrein – EDSAwareness.com
Chronic Pain Partners is excited to share a significant breakthrough from the Norris Lab regarding hypermobile Ehlers-Danlos Syndrome (hEDS). After a long wait, the research, spearheaded by Dr. Cortne...
buff.ly
November 19, 2024 at 8:43 AM
Reposted
cppedsa.bsky.social
New Research Study Finds Everything is Connected, As Many Patients Suspected

https://buff.ly/3YLItPq

#EDS #hEDS #Hypermobility #HSD #Fibromyalgia #POTS #Dysautonomia #IBS #MCAS #MCD #MedEd #MedTwitter #Doctors #Nurses #NEISvoid #Chiari #CCI #Zebras
New Research Study Finds Everything is Connected, As Many Patients Suspected – EDSAwareness.com
New hypermobile EDS research shows insurers the costly data behind unrecognized patient care.
buff.ly
November 24, 2024 at 3:14 PM
Reposted
cppedsa.bsky.social
Research news: Could a blood test for hEDS and HSD be possible? It sure looks like it…

https://buff.ly/3XEDS1c

#EDS #hEDS #HSD #Hypermobility #NEISvoid #MedEd #Genetics #Science #Zebras #Doctors
Research News: Could a Blood Test for hEDS & HSD Be Possible? – EDSAwareness.com
Italian researchers publish a study with the support of the EDS Society, potentially finding a protein that could lead to a blood test for hEDS and HSD. More research is needed, but it's a hopeful…
buff.ly
November 26, 2024 at 3:14 PM
Reposted
chronicallysheeks.bsky.social
If you are chronically ill and want to connect with other Spoonies or just support Spoonies add #spooniesky to your posts.

REPOST for traction.

#ihstrong #iih
#chronicalyfabulous #chronicillness #addspooniesky
#spoonies #spooniesky
#blacksky #brainpain #invisibleillness #disabledsky
Woman in a wheelchair in a hallway. Spooniesky written find your people.
November 30, 2024 at 4:09 AM
Reposted
chronicillness.bsky.social
chronically ill
#chronicillness #chronicallyill #chronicillnessmemes
I am feeling great today. Official sources state that this is false and misleading
December 1, 2024 at 2:39 PM
Reposted
chronicillness.bsky.social
Art by Dami_Lee on Tumblr
#chronicillness #chronicallyill #chronicillnessmemes
4 panel comic 1st panel: santa with a little girl on her lap and she says 'for xmas I want a dragon!" 2nd panel: santa says 'be realistic' 3rd panel: girl says 'i want to have a healthy body with no pain' 4th panel: santa says 'what color do you want your dragon' girl says 'red' while crying.
December 1, 2024 at 5:36 PM
Reposted
ohtwist.bsky.social
A growing list of books on the Ehlers-Danlos Syndromes & Hypermobility:

ohtwist.com/eds-resource...

#EDS #HMS #fibromyalgia #meded #FOAMed #doctors #nurses #autism #MCAD #NEISvoid #fibro #ChronicIllness #zebras #EhlersDanlosSyndrome
Recommended Books- Living and Coping with EDS and Related Diseases
Recommended Books provides a listing or books and other reading resources for those living and coping with EDS, MCAD and other comorbid diseases. A must see and read list of books!
ohtwist.com
December 2, 2024 at 5:55 AM
Reposted
chronicillness.bsky.social
chronic illness and disability
#chronicillness #chronicallyill #disability
Chronic Illness/Disability Stop making me feel bad for being unable to keep up with you. -I did not choose this -I did not want this - I did not make this happen -I'm not faking this -I'm not asking for sympathy Please understand that I'm doing the best that I can.
December 2, 2024 at 12:09 AM
Reposted
ohtwist.bsky.social
Patients with #EhlersDanlos or #Hypermobility Spectrum Disorders can spring CSF leaks anywhere along their dura and from noses & ears

ohtwist.com/about-eds/co...

#EDS #HSD #meded #FOAMed #doctors #nurses #medstudents #MedTwitter #NEISvoid
Comorbidities Common with Ehlers Danlos Syndrome
Comorbidities (unofficial) listing of diseases and syndromes that are commonly found in people with Ehlers Danlos Syndrome.
ohtwist.com
December 2, 2024 at 5:56 AM
Reposted
cppedsa.bsky.social
Find Answers Faster via The New EDS411 Living Library - here to help you wade through the vast sea of EDS information to be found on the internet and social media:

https://buff.ly/3XzMcQF

#EDS #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #MedEd #NEISvoid #Zebras
Find Answers Faster: The EDS411 Living Library – EDSAwareness.com
The new hyperlink hub of resources enables Ehlers-Danlos syndrome (EDS) patients to take control of their health with access to searchable, credible insights by keyword or category. Knowledge is a…
buff.ly
November 28, 2024 at 3:10 PM
Reposted
alansmitheedga.bsky.social
November 28, 2024 at 4:40 PM
nixinix.bsky.social
📌
naomidharvey.bsky.social Naomi Harvey PhD @naomidharvey.bsky.social · Nov 26
If you have DNA data already from 23andMe or Ancestry etc and you’d like to navigate genetic insights into your own health, I strongly recommend this website and the Cheat Sheet below ⬇️ it’s an excellent summary of personalised genetic insights and each links to articles with in depth info #MEcfs
November 27, 2024 at 2:46 AM
Reposted
ashaence.bsky.social
*whispers* Glasses are a disability and accessibility aid. They've just been normalized so people don't generally think of them as such. Now, imagine if all other aids were just as destigmatized and normalized.
November 22, 2024 at 5:22 AM
Reposted
ohtwist.bsky.social
Resistance to local anesthesia (seen) in people with the Ehlers-Danlos Syndromes presenting for dental surgery 2019 Schubart, Schaefer, Janicki et al
buff.ly/2wEJ4co
#EDS #hEDS #Hypermobility #HSD #fibro #Fibromyalgia #NEISvoid #MedTwitter #Dentistry
Resistance to local anesthesia in people with the Ehlers-Danlos Syndromes presenting for dental surgery
People with the Ehlers-Danlos Syndromes (EDS), a group of heritable disorders of connective tissue, often report experiencing dental procedure pain despite local anesthetic (LA) use. Clinicians have b...
buff.ly
November 11, 2024 at 9:28 AM
nixinix.bsky.social
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November 22, 2024 at 2:03 AM