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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness
@cppedsa.bsky.social
790 followers 1.2K following 270 posts
An online resource for the EDS and HSD community. We provide informative resources and education for patients, families and physicians about the Ehlers-Danlos Syndromes and related conditions. https://chronicpainpartners.com
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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 6d
Fresh #EDS News from Chronic Pain Partners includes a new lab, genetic news, a new podcast and more:

buff.ly/UyLbCzo

#EhlersDanloSyndrome #Hypermobility #hEDS #HSD #Zebras #Spoonies #NEISvoid #Medicine #Genetics #Doctors #Nurses #MedEd #Research
EDS Newsletter October 2025: New Study hEDS gene, New EDS Podcast
New EDS Lab, hEDS gene research, IIH, Hormones and EDS, New Podcast, Book with EDS character The Chronic Pain Partners Post Chronic Pain Partners…
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Reposted by Chronic Pain Partners - EDS Awareness
ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 19h
Check it out! New #EDS podcast sponsored by CPP! Invisible Disabilities Week starts October 19th by the way.
cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 1d
Here's a clip from our new EDS Unplugged Podcast Episode 1 "Invisible Disabilities" discussing the benefits of the sunflower lanyard in the UK:

#Zebras #NEISvoid #EDS #hEDS #HSD #MCAS #MedSky #Podcast #Hypermobility #Disability #Disabilities
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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 1d
Here's a clip from our new EDS Unplugged Podcast Episode 1 "Invisible Disabilities" discussing the benefits of the sunflower lanyard in the UK:

#Zebras #NEISvoid #EDS #hEDS #HSD #MCAS #MedSky #Podcast #Hypermobility #Disability #Disabilities
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Reposted by Chronic Pain Partners - EDS Awareness
jefflubellc19.bsky.social
Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research) @jefflubellc19.bsky.social · 17d
Third. the inter-relationship of connective tissue and mast cells may lead people with #EDS or hypermobility spectrum disorder to be vulnerable to mast cell activation disorders, which can in turn prompt both #POTS and conditions like #LongCOVID and #MECFS. 8/20 link.springer.com/article/10.1...
Association of mast-cell-related conditions with hypermobile syndromes: a review of the literature - Immunologic Research
Ehlers–Danlos syndrome (EDS) is a group of related connective tissue disorders consisting of 13 subtypes, each with its own unique phenotypic and genetic variation. The overlap of symptoms and multitu...
link.springer.com
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Reposted by Chronic Pain Partners - EDS Awareness
solveme.bsky.social
Solve M.E. @solveme.bsky.social · 5d
🎓 Solve is proud to sponsor the Oct 31 #IACC Case Competition at University of Michigan Ross School of Business! Patients, advocates, & experts come together to tackle challenges like #LongCovid #ME/CFS #POTS & more. Registration (in-person or virtual) is free!
ow.ly/XqgT50X6tQ5
Invitation to the IACC Case Competition at University of Michigan Ross, focusing on infection-associated chronic conditions like Long COVID and ME/CFS, held October 31st, hybrid format.
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Reposted by Chronic Pain Partners - EDS Awareness
longcovidsos.bsky.social
Long Covid SOS @longcovidsos.bsky.social · 8d
October is #DysautonomiaAwarenessMonth

For many with #LongCovid, dysautonomia means daily struggles with dizziness, palpitations, fatigue & more

We need research, support & compassion
Let’s #MakeNoiseForTurquoise this October

#POTS #Dysautonomia #invisibleillness
Turquoise background with overlapping blue circles. In the centre, a simple illustration of a person with turquoise hair. Text around the person reads: “Dysautonomia Awareness Month.” Circles highlight symptoms: gastrointestinal issues, PoTS, heart palpitations, fatigue, shortness of breath, dizziness, cognitive issues, temperature dysregulation. Fainter circles in the background say and many many many more Long Covid SOS logo at the bottom left in white
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Reposted by Chronic Pain Partners - EDS Awareness
batemanhornecenter.bsky.social
Bateman Horne Center @batemanhornecenter.bsky.social · 7d
October is #POTS Awareness Month!
POTS is a serious condition where simply standing can cause rapid heart rate, dizziness, fainting, and crushing fatigue. It often strikes those with #MECFS & #LongCOVID. All month we’re sharing resources & raising visibility. Stay tuned!
White ribbon on teal background with text: "October is POTS Awareness Month."
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Reposted by Chronic Pain Partners - EDS Awareness
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 3d
From ME Research UK:

Throughout October, we will mark #DysautonomiaAwarenessMonth. #Dysautonomia refers to conditions affecting the autonomic nervous system, such as #PoTS and vasovagal syncope. Dysautonomia can impact quality of life. People with #MECFS often report symptoms. tinyurl.com/3f5sxbza
OCTOBER IS DYSAUTONOMIA AWARENESS MONTH Dysautonomia is an umbrella term that describes a disorder of the autonomic nervous system. It is recognised that viruses can trigger dysautonomia. Many people with ME/CFS experience symptoms of dysautonomia. INFORM. INFLUENCE. INVEST. aft RESEARCH UK SCO36942
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Reposted by Chronic Pain Partners - EDS Awareness
thezebraalliance.bsky.social
The Zebra Alliance Community @thezebraalliance.bsky.social · 2d
Over the yrs, we have seen more connection (via studies), and land up with more questions 😉
We stopped sharing the study - Preliminary info only bolsters the mental illness stereotype = Unnecessarily hurts (the mental health of) 🏳️‍⚧️ folks already dealing w enough BS. Unfortunately, progress can hurt 🥺
sedsconnective.org
SEDSConnective @sedsconnective.org · 2d
A big health study looked at how common a condition called hypermobility Ehlers-Danlos syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) is in transgender and genderdiverse or gender expansive (TGD) people compared to cisgender people www.sedsconnective.org/research
Tabernacki et al (2025)
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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 2d
Ah, understood.
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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 3d
Totally understand. We have a whole series on clinician-generated trauma in our patient guides.

Glad you are finding an alternative.
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Reposted by Chronic Pain Partners - EDS Awareness
thezebraalliance.bsky.social
The Zebra Alliance Community @thezebraalliance.bsky.social · 4d
These are great suggestions!
Would you add anything to this list?

#chronicillness #raredisease #chronicpain #invisibleillness #EDS #hEDS #HSD #healthcare
cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 4d
Building a Supportive and Caring Medical Team No Matter Where You Live - guest post by Jon Rodis

buff.ly/yZJQeDw

#EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Spoonies #Zebras #Patients #ChronicIllness #NEISvoid #MedSky
Blue on white infographic reads: "BUILDING YOUR MEDICAL TEAM: A PATIENT CHECKLIST." There are seven tips, each with a green checkmark: Describe your daily life clearly: Tell doctors about your pain, fatigue, GI issues, and daily limitations. Use relatable examples: Compare your challenges to things doctors know (like having the flu). Ask trusted doctors for referrals: “Who would you send your own child to?” is a powerful question. Stay focused in appointments: Bring a short, organized list of issues related only to that doctor’s specialty. Share helpful resources: Provide links to articles or presentations. If they’re not interested, consider moving on. Don’t overlook younger doctors: They’re often eager to learn and open-minded. Use your support network: Ask local groups and friends. There are small illustrations including a thermometer, clipboard, doctor, group of people. "www.chronicpainpartners.com" and in the top right corner is a logo for EDS Awareness (Ehlers-Danlos Syndromes).
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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 4d
Building a Supportive and Caring Medical Team No Matter Where You Live - guest post by Jon Rodis

buff.ly/yZJQeDw

#EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Spoonies #Zebras #Patients #ChronicIllness #NEISvoid #MedSky
Blue on white infographic reads: "BUILDING YOUR MEDICAL TEAM: A PATIENT CHECKLIST." There are seven tips, each with a green checkmark: Describe your daily life clearly: Tell doctors about your pain, fatigue, GI issues, and daily limitations. Use relatable examples: Compare your challenges to things doctors know (like having the flu). Ask trusted doctors for referrals: “Who would you send your own child to?” is a powerful question. Stay focused in appointments: Bring a short, organized list of issues related only to that doctor’s specialty. Share helpful resources: Provide links to articles or presentations. If they’re not interested, consider moving on. Don’t overlook younger doctors: They’re often eager to learn and open-minded. Use your support network: Ask local groups and friends. There are small illustrations including a thermometer, clipboard, doctor, group of people. "www.chronicpainpartners.com" and in the top right corner is a logo for EDS Awareness (Ehlers-Danlos Syndromes).
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Reposted by Chronic Pain Partners - EDS Awareness
thezebraalliance.bsky.social
The Zebra Alliance Community @thezebraalliance.bsky.social · 8d
Super cool!
If in New York + have EDS, definitely check Hyp+Care out next year! Mark your calendar. 🤗 🩵🦓🩵
cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 10d
New EDS savvy clinic Hyp+Care set to open later 2026 in NYC - check it out:

buff.ly/DzKxUKv

#EDS #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #Fibro #MCAS #MECFS #LongCOVID #Spoonies #POTS #Dys #NEISvoid #Medicine #zebras #MedSky
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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 6d
Fresh #EDS News from Chronic Pain Partners includes a new lab, genetic news, a new podcast and more:

buff.ly/UyLbCzo

#EhlersDanloSyndrome #Hypermobility #hEDS #HSD #Zebras #Spoonies #NEISvoid #Medicine #Genetics #Doctors #Nurses #MedEd #Research
EDS Newsletter October 2025: New Study hEDS gene, New EDS Podcast
New EDS Lab, hEDS gene research, IIH, Hormones and EDS, New Podcast, Book with EDS character The Chronic Pain Partners Post Chronic Pain Partners…
buff.ly
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Reposted by Chronic Pain Partners - EDS Awareness
thezebraalliance.bsky.social
The Zebra Alliance Community @thezebraalliance.bsky.social · 9d
When you are "unemployable" + are an EDS er living in Trump's USA = 🥺😖 It has cost my father $36k + CO pays for my healthcare + the hours my son spends caring for me... and we still have 3 months left in 2025 🗓
#ehlersdanlossyndrome #chronicillness
You can help us 🩵🦓🩵 linktr.ee/thezebraalliance
cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 9d
EDS Expenses Exposed: Report Peeks at Financial Burden of Living with Ehlers-Danlos early 2025:

buff.ly/sNwdFZ2

#EDS #hEDS #Hypermobility #HSD #NEISvoid #POTS #Zebras #Finances
EDS Expenses Exposed: Report Peeks at Financial Burden of Living with Ehlers-Danlos – EDSAwareness.com
If you or someone you know is dealing with Ehlers-Danlos Syndromes (EDS), understanding the financial impact is crucial, and until now could not be quantified by research. A recent study’s results…
buff.ly
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Reposted by Chronic Pain Partners - EDS Awareness
ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 10d
Prolotherapy is a treatment that involves injecting an irritant solution (often sugar-based) into ligaments, tendons, or joints. [Thread] youtu.be/sigAJALk6vE?...
⁠
Prolotherapy: Exploring Its Role - Dr. Fraser Burling - 2024 GLC
YouTube video by The Ehlers-Danlos Society
youtu.be
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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 9d
EDS Expenses Exposed: Report Peeks at Financial Burden of Living with Ehlers-Danlos early 2025:

buff.ly/sNwdFZ2

#EDS #hEDS #Hypermobility #HSD #NEISvoid #POTS #Zebras #Finances
EDS Expenses Exposed: Report Peeks at Financial Burden of Living with Ehlers-Danlos – EDSAwareness.com
If you or someone you know is dealing with Ehlers-Danlos Syndromes (EDS), understanding the financial impact is crucial, and until now could not be quantified by research. A recent study’s results…
buff.ly
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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 10d
New EDS savvy clinic Hyp+Care set to open later 2026 in NYC - check it out:

buff.ly/DzKxUKv

#EDS #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #Fibro #MCAS #MECFS #LongCOVID #Spoonies #POTS #Dys #NEISvoid #Medicine #zebras #MedSky
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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 11d
Film review: "Exhausted Existence - An EDS Story" by Jennifer Kain 2025:

buff.ly/uR4tZCI

#EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #Medicine #MedEd #Doctors #Zebras #ChronicFatigue #Spoonies #NEISvoid #Documentary #Nurses #Film
Film review poster for "Exhausted Existence: An EDS Story" by Jennifer Kain. The background is teal with a film strip frame in the center. Inside the frame, there's an image of a person lying on a brown sofa, appearing tired. The top left corner features a circular logo with "EDS Awareness" and "Ehlers-Danlos Syndromes" written inside. The website "www.chronicpainpartners.com" is at the bottom.
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Reposted by Chronic Pain Partners - EDS Awareness
ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 13d
#VascularEhlersDanlossyndrome (vEDS) is a heritable connective tissue disorder that makes the connective tissue very fragile, particularly in the blood vessels and hollow organs.

youtu.be/hL2uWv1z7vc?... #Healthcare #HealthProfessionals #Vascular #vEDS
A Doctor’s Guide to Vascular EDS: Recognizing the Signs for Early Diagnosis
YouTube video by Doctor Clair
youtu.be
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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 12d
Understanding Your Flare Fettered Friend - how to lend support for your loved ones going into a flare…

buff.ly/WI3eZM1

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Fibro #Spoonies #Zebras #NEISvoid #Pain #CPP #ChronicPain #Support
A woman is lying on a bed, appearing to be in discomfort, with her hands holding her abdomen. She is wearing a light-colored long-sleeve top and gray pants. The text on the image reads: "How to help your... Flare Fettered Friend." There is a logo in the top left corner with "EDS Awareness" and "Ehlers-Danlos Syndromes." At the bottom, it says "Guest post by Avi - May 2025" and "www.chronicpainpartners.com." There are also silhouettes of birds in flight.
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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 13d
Hear what EDSers think about the current 2017 Diagnostic criteria that won't be addressed until later 2026:

buff.ly/RKGrs5m

#EDS #hEDS #HSD #Hypermobility #Medicine #Doctors #Genetics #Zebras #MedSky #FOAMed
Orange promotional pic showing a circular logo in the upper left that reads EDS Awareness Ehlers-Danlos Syndromes. Then "CPP community diagnostic criteria survey results are in!" in large teal letters. A stock photo shows a hand filling in a multiple choice survey page in the lower right. A large icon of a bullhorn with sound symbols coming out is in black overlaid on the left side. The words "And we want changes, stat!" appear in white at the bottom along with www.chronicpainpartners.com.
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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 14d
EDS Expenses Exposed: Report Peeks at Financial Burden of Living with Ehlers-Danlos early 2025:

buff.ly/sNwdFZ2

#EDS #hEDS #Hypermobility #HSD #NEISvoid #POTS #Zebras #Finances
EDS Expenses Exposed: Report Peeks at Financial Burden of Living with Ehlers-Danlos – EDSAwareness.com
If you or someone you know is dealing with Ehlers-Danlos Syndromes (EDS), understanding the financial impact is crucial, and until now could not be quantified by research. A recent study’s results…
buff.ly
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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 15d
Check out our new Clinician Associated Trauma Series, now available under our Patient Guides on our menu:

buff.ly/3Rjsjd5

#EDS #hEDS #HSD #Hypermobility #MedEd #NEISvoid #PTSD #CPTSD #Doctors #Spoonies #Zebras #CPP #Trauma #Medicine
Clinician-Associated Trauma Series
A series of articles by Chronic Pain Partners' staff writer Kate Schultz explaining trauma concepts, discussing the clinician-associated trauma study, going deeper into the causes of…
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thezebraalliance.bsky.social
The Zebra Alliance Community @thezebraalliance.bsky.social · 16d
"... found 35 blood proteins that were different in people with #hEDS ... Most of these changes were in proteins linked to the immune system, 🩸 clotting, blood pressure, and inflammation. The largest ... involved the complement system, which helps the body fight infection & control inflammation."
ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 20d
New research into #hypermobileEDS! www.ehlers-danlos.com/exciting-new...
Exciting New Research Sheds Light on hEDS Biology - The Ehlers Danlos Society
We are excited to share a new paper published yesterday: Proteomic discoveries in hypermobile Ehlers–Danlos syndrome reveal insights into disease pathophysiology by Griggs M, Gensemer C, et al. (Immun...
www.ehlers-danlos.com
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