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cppedsa.bsky.social
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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Don't miss! This #EDS film débuts tomorrow, Sunday 2/23/25 and Monday 2/24/25 at Slamdance in LA! Rumor has it you can get a virtual viewing ticket for $50, too.

submitted 2 days ago • 0 comments

Great news! EDS film COMPLICATED will debut this month in LA at the Slamdance Film Festival on Sunday, February 23rd and Monday, February 24th. Details: https://buff.ly/3Eqk7Ev #EDS #hEDS #HSD #Hypermobility #Zebras #Film #Medicine #NEISvoid #Doctors #nurses #MedSky #CPP

submitted 21 days ago • 1 comment

Chronic Illness Apps: Why Use Them and Ones to Try for EDS Management https://buff.ly/3ZQCrPP #EhlersDanlosSyndrome #Hypermobility #HSD #tech #Health #Zebras #NEISvoid #MedEd #Medicine #Patients #Spoonies #EDS #POTS #MCAS

submitted 25 days ago • 0 comments

From 2024 - Norris Lab Finds an hEDS Gene: Kallikrein While only a preprint yet, this pushes the science forward for those with #hEDS https://buff.ly/4cj40El #EDS #hEDS #EhlersDanlosSyndrome #NEISvoid #Science #Research #Medicine #Genetics #MedEd #Doctors #Zebras #MedSky

submitted 18 days ago • 0 comments

We welcome your tax-deductible support at any time to help us continue to bring you the latest EDS-related news and info all year, thank you: https://buff.ly/4cUot2T #EDS #hEDS #HSD #NEISvoid #Zebras #CPP #Spoonies #Disability #MedEd #MedSky

submitted 27 days ago • 0 comments

Check out our new Clinician Associated Trauma Series, now available under our Patient Guides on our menu: https://buff.ly/3Rjsjd5 #EDS #hEDS #HSD #Hypermobility #MedEd #NEISvoid #PTSD #CPTSD #Doctors #Spoonies #Zebras #CPP #Trauma #Medicine

submitted 20 days ago • 0 comments

Great news! EDS film COMPLICATED will debut this month in LA at the Slamdance Film Festival on Sunday, February 23rd and Monday, February 24th. Details: https://buff.ly/3Eqk7Ev #EDS #hEDS #HSD #Hypermobility #Zebras #Film #Medicine #NEISvoid #Doctors #nurses #MedSky #CPP

submitted 21 days ago • 1 comment

Low-Dose Naltrexone: Possible Pain Relief in a Small Package https://buff.ly/3NWwE3U #EDS #EhlersDanlosSyndrome #hEDS #Hypermobility #Fibromyalgia #Fibro #CPP #Pain #Spoonies #NEISvoid #MedSky #Medicine #Doctors #Nurses #Zebras

submitted 23 days ago • 1 comment

2/6 International Day of the Zebra: People with EDS are often overlooked (misdiagnosed and undiagnosed) because of the teaching, "When you hear hoofbeats behind you, don't expect to see a Zebra." @ehlersdanlos.bsky.social #ehlersdanlos #ehlersdanlossyndrome #HSD

submitted 24 days ago • 1 comment

Chronic Illness Apps: Why Use Them and Ones to Try for EDS Management https://buff.ly/3ZQCrPP #EhlersDanlosSyndrome #Hypermobility #HSD #tech #Health #Zebras #NEISvoid #MedEd #Medicine #Patients #Spoonies #EDS #POTS #MCAS

submitted 25 days ago • 0 comments

"Respecting that our #daughters know their bodies best, even when they act otherwise, can be hard to accept, but it is a necessary part of letting go": https://buff.ly/3oTDi1z by @cppedsa.bsky.social #ChronicIllness #EhlersDanlosSyndrome #EDS #parenting

submitted 26 days ago • 0 comments

We want to share a blog post we have been working on. 😀 #EDS #chronicillness #raredisease #health #disability #adaptivesports #ehlersdanlossyndrome #sports #dynamicdisability #health #travel #accessibleoutdoors

submitted 25 days ago • 0 comments

Basic Emergency Care Planning for EDS Patients https://buff.ly/3J8uxZe #EDS #hEDS #Hypermobility #HSD #MCD #NEISvoid

submitted 33 days ago • 0 comments

We welcome your tax-deductible support at any time to help us continue to bring you the latest EDS-related news and info all year, thank you: https://buff.ly/4cUot2T #EDS #hEDS #HSD #NEISvoid #Zebras #CPP #Spoonies #Disability #MedEd #MedSky

submitted 27 days ago • 0 comments

The struggle is very real: If you don't live with chronic illness, you will never truly understand. Just be there for people. Compassion makes a big difference. 💜 #chronicillness #EDS #ehlersdanlos #invisibleillness #raredisease #disability #dynamicdisability #chronicpain #pain #selfcare #survivor

submitted 28 days ago • 0 comments

Save the dates March 17-23 for Neurodiversity Celebration Week 2025... see this site for details: https://buff.ly/34N402o #EDS #hEDS #HSD #Autism #ADHD #Dyslexia #OCD #Tourettes #Neurodiversity #Neurodivergence #Zebras #NEISvoid

submitted 29 days ago • 0 comments

POTS vs. Anxiety: The Misdiagnosis Maze many patients face https://buff.ly/3Yps3x7 #EDS #hEDS #HSD #POTS #Hypermobility #Anxiety #MedEd #Doctors #Nurses #Medicine #MedSky #Medicine #NEISvoid #Spoonies #Zebras

submitted 39 days ago • 0 comments

Help wanted stat! Seeking a paid webinar coordinator and volunteer writers to join our media team for 2025! Details here: https://buff.ly/49jZ0PE and here: https://buff.ly/3CZ1Ihr Or email [email protected] #EDS #HSD #hEDS #NEISvoid #DisCo #Media #Zebras #Video #Writing

submitted 32 days ago • 0 comments

Basic Emergency Care Planning for EDS Patients https://buff.ly/3J8uxZe #EDS #hEDS #Hypermobility #HSD #MCD #NEISvoid

submitted 33 days ago • 0 comments

How Rebecca Yarros’ “Fourth Wing” Embodies Ehlers-Danlos Syndrome https://buff.ly/42cBZMW #EDS #hEDS #Hypermobility #HSD #Writing #Books #NEISvoid #Zebras #Spoonies #Fiction #Dragons #Disability #DisCo #BookSky

submitted 43 days ago • 1 comment

Venn Diagram for Chronic Illness #chronicillness #chronicillnessmemes #chronicillnesshumor

submitted 43 days ago • 8 comments

Digesting the Facts: Tackling Gastrointestinal Challenges in EDS https://buff.ly/41XJxmF #EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #IBS #NEISvoid #MedEd #Zebras #Spoonies #POTS #MCAS #MedSky #Doctors #Nurses

submitted 34 days ago • 0 comments

Check out our January Newsletter and be sure to subscribe to get future ones by email. We have a lot coming your way this year... https://buff.ly/3PhhtTw #EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #NEISvoid #MedEd #Medicine #MedSky

submitted 35 days ago • 0 comments

You made a difference in scientific research for #hEDS, learn how: https://buff.ly/4cYywEf #EhlersDanlosSyndrome #EDS #Hypermobility #HSD #NEISvoid #Genetics #Medicine #MedEd #Zebras #Spoonies #CPP #MedSky

submitted 41 days ago • 0 comments

Check out our listicle of Documentary Films about the Ehlers-Danlos Syndromes and more here: https://buff.ly/4dTrBfZ #EDS #hEDS #Hypermobility #HSD #Spoonies #NEISvoid #Zebras #Film #Medicine #POTS #MCAS #Disability #MedEd #Doctors #Diagnostics #Genetics #RareDiseases #MedSky

submitted 42 days ago • 0 comments

POTS vs. Anxiety: The Misdiagnosis Maze many patients face https://buff.ly/3Yps3x7 #EDS #hEDS #HSD #POTS #Hypermobility #Anxiety #MedEd #Doctors #Nurses #Medicine #MedSky #Medicine #NEISvoid #Spoonies #Zebras

submitted 39 days ago • 0 comments

Very interesting article about hEDS. I have a lot of sensory issues, I've struggled with migraines & bad allergies. This should hopefully help some people to get diagnosed before they're 30 and wrecked their body! & for non verbal communicators, carers understanding the pain/fatigue is so important

submitted 39 days ago • 1 comment

Neurodivergence and Hypermobility: Understanding the EDS Connection - grab a snack, as we explore the co-occurrence of autism and ADHD with hEDS and more: https://buff.ly/421nMlV #EDS #hEDS #HSD #Hypermobility #Neurodivergence #Autism #ADHD #Tourettes #NEISvoid #MedSky #Neurodiversity

submitted 40 days ago • 2 comments

You made a difference in scientific research for #hEDS, learn how: https://buff.ly/4cYywEf #EhlersDanlosSyndrome #EDS #Hypermobility #HSD #NEISvoid #Genetics #Medicine #MedEd #Zebras #Spoonies #CPP #MedSky

submitted 41 days ago • 0 comments

Check out our listicle of Documentary Films about the Ehlers-Danlos Syndromes and more here: https://buff.ly/4dTrBfZ #EDS #hEDS #Hypermobility #HSD #Spoonies #NEISvoid #Zebras #Film #Medicine #POTS #MCAS #Disability #MedEd #Doctors #Diagnostics #Genetics #RareDiseases #MedSky

submitted 42 days ago • 0 comments

Check out our new listicle of our favorite #EDS Podcasts - and suggest any others you think we should add. It's so great to hear from fellow zebras who get it: https://buff.ly/3xOY9bq #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #NEISvoid #Spoonies #MedEd #MedSky #CPP

submitted 46 days ago • 0 comments

How Rebecca Yarros’ “Fourth Wing” Embodies Ehlers-Danlos Syndrome https://buff.ly/42cBZMW #EDS #hEDS #Hypermobility #HSD #Writing #Books #NEISvoid #Zebras #Spoonies #Fiction #Dragons #Disability #DisCo #BookSky

submitted 43 days ago • 1 comment

Digesting the Facts: Tackling Gastrointestinal Challenges in EDS https://buff.ly/41XJxmF #EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #IBS #NEISvoid #MedEd #Zebras #Spoonies #POTS #MCAS #MedSky #Doctors #Nurses

submitted 48 days ago • 0 comments

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

submitted 44 days ago • 0 comments

Check out our new listicle of our favorite #EDS Podcasts - and suggest any others you think we should add. It's so great to hear from fellow zebras who get it: https://buff.ly/3xOY9bq #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #NEISvoid #Spoonies #MedEd #MedSky #CPP

submitted 46 days ago • 0 comments