#ConnectiveTissueDisorders
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sibylledahrendorf.bsky.social
5/5 #LABYRINTH #FQAD #FluoroquinoloneToxicity #Toxicity #LongLyme #MEcfs #LongCovid #PostVac #VacInjuries #POTS #SmallFiber #Neuropathy #MCAS #EDS #ConnectiveTissueDisorders #CCI #ChronicIllness #LongList #LongTragedy
August 17, 2026 at 5:59 PM
chronicpaingal.bsky.social
It’s February 28, and this is Rare Disease Day! 🦓

#ConnectiveTissueDisorders
#Genetics
#zebra
#RareDiseaseDay2025
#Disability
February 28, 2025 at 5:23 PM
bendyhedsandco.bsky.social
#ConnectiveTissueDisorders
#Marfans #EDS
January 8, 2025 at 2:58 AM
Dealing with a rare condition isn't just a physical battle. We need better awareness, systemic support, and fully integrated mental health care for rare disease patients and their families. 🩵 #ConnectiveTissueDisorders #EDS #Advocacy
eurordis.bsky.social EURORDIS-Rare Diseases Europe @eurordis.bsky.social · Jun 18
7 in 10 people living with a rare disease and their families report poor mental health.

New #RareBarometer data from nearly 10,000 respondents across 45 countries shows why mental health support must be an integral part of rare disease care. 👉 https://go.eurordis.org/RareBarometer
Adult and child embracing outdoors beside text announcing Rare Barometer survey results now published.
June 24, 2026 at 11:37 AM
unremarkableme.bsky.social
Today we take a look at
Brittle Cornea Syndrome (BCS) a rare but serious complication of Ehlers-Danlos Syndrome (EDS). Learn how they connect & why early diagnosis matters!
#BrittleCorneaSyndrome #EDS #RareDisease #ConnectiveTissueDisorders
#Ehletsdanlos

www.unremarkableme.com/post/brittle...
Brittle Cornea Syndrome and Ehlers-Danlos Syndrome: A Delicate Connection
If you're part of the Ehlers-Danlos Syndrome (EDS) community, you already know that your body operates on a "hard mode" setting—your joints are bendier than a circus act, your skin thinks it's made of...
www.unremarkableme.com
February 27, 2025 at 9:30 AM
vascern.bsky.social
For parents of children with connective tissue disorders, finding clear information about surgery is hard. Three specialist surgeons will answer your questions on 9 June at 17:30 CEST.

👉 ec.europa.eu/eusurvey/run...

#RareDisease #ConnectiveTissueDisorders #VASCERN
May 28, 2026 at 7:08 AM
emptynest70.bsky.social
#disabled
Also sick of 15, yes 15 yrs of medical gaslighting.
"nothing to see here, you're fine"
#EDS #SORGHRENS #CONNECTIVETISSUEDISORDERS
if i could exit this world I would, but if I have to stay, at least diagnosis and treat.
Had this my entire 70 yrs, no one is listening. Dr wait,up to a yr.
January 15, 2026 at 8:22 PM
jrheumatol.bsky.social
Panorama

Patient Perspectives and Clinical Insights Into the Diagnostic Journey From Connective Tissue Disease to Pulmonary Arterial Hypertension

📖 doi.org/10.3899/jrhe...

#connectivetissuedisorders #pulmonaryarterialhypertension
May 20, 2025 at 4:17 PM
drzneurosurgery.bsky.social
Unlock the mystery of your body's flexibility! 🌟 Discover the power of the Beighton Scale, a key component of the Brighton criteria, with 5 simple tests you can do at home! Perfect for understanding more about #Collagen, #EhlersDanlos, and #ConnectiveTissueDisorders. Dive into the world of
September 18, 2025 at 2:17 PM
chronicaction.bsky.social
The scale of what has been coined the biggest medical scandal of the 21st century is enormous, encompassing numerous conditions. We are long overdue joining the dots

#ME #chronicfatiguesyndrome #EDS #connectivetissuedisorders #MCAS #POTS #fibromyalgia #postviralsyndrome including #longcovid
mediumwhite.bsky.social Peter White @mediumwhite.bsky.social · Jun 19
Dr Kane calls for investment, but also easier use of off-label therapies on the NHS.

This would be a new policy for some ME organistions, and could be a really wellcome change. Should we wait for RCTs for every drug when there are people in such desperate circumstances?
June 19, 2025 at 5:16 PM