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Chronic Pain Partners - EDS Awareness

@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

401 Posts906 Follower1268 Folgt
A Chronic Voice@achronicvoice.com · last mo.

"A call from #school, a #son in shock, another #ambulance racing against time. All the old fears returned the ones that ask whether anyone will listen, whether we will once again be asked to prove our reality.": buff.ly/WP3heC3 via @cppedsa.bsky.social #allergies #motherhood #ChronicIllness #parent

The Silence After Survival – EDSAwareness.com

This week arrived like a storm we already knew by heart,yet somehow… it carried a different kind of wind.

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OhTWIST@ohtwist.bsky.social · last mo.

It was an honor to know and work with John. RIP dear friend. You've blessed - and continue to bless - oodles of people around the world. This is a beautiful tribute by fellow EDSer @karinasturm.bsky.social.

Chronic Pain Partners - EDS Awareness@cppedsa.bsky.social · last mo.

Where People Understand - short film by EDSer Karina Sturm in tribute to CPP founder and president John Ferman, d. Nov 11, 2025: youtu.be/vLar9uhx0NE?... #EDS #hEDS #HSD #EDSAwareness #CPP #Zebras #film

Square short film promo. Top left text in circular white logo: “EDS Awareness Ehlers-Danlos Syndromes” Center top orange title: “Where People Understand” Smaller white text under that: “A short film by EDSer Karina Sturm honoring John Ferman’s legacy of EDS Advocacy June 2026” Center image shows John Ferman in early 2025, an older light‑skinned man sitting in a brown upholstered chair, smiling warmly up at someone off camera. He is wearing a white baseball cap and light blue collared shirt with a small microphone clipped near the buttons. On his left is a white dove illustration. Lower right, a zebra EDS awareness ribbon. To the right side of that is a vertical teal panel with an illustration of a lit yellow taper candle. Below that is a small rectangular photo of a garden including a large bright red poppy in the foreground and purple flowers and houses blurred in the background. Bottom text: “www.chronicpainpartners.com”
A Chronic Voice@achronicvoice.com · 2mo ago

"We did not have to fight. Not this time. Not in that room. Not with those people... And I… I didn’t know how to stand in a place where #compassion came freely. I felt unsteady, unfamiliar with relief.": buff.ly/emeCUhA via @cppedsa.bsky.social #ChronicPain #PatientCare #healthcare #nurse #doctor

The Silence After Survival – EDSAwareness.com

This week arrived like a storm we already knew by heart,yet somehow… it carried a different kind of wind.

buff.ly

Larre Bildeston@larreau.bsky.social · 3mo ago

“Well I don’t agree it’s POTS.” “A colleague of yours already diagnosed it.” “Well not all cardiologists agree.” *shrugs* “It’s a diagnosis of exclusion.” (Folks, it’s POTS. also MEcfs and MCAS.) Doctor who doesn’t think it’s POTS: “What are your plans for a career? You have to attend school.”

A Chronic Voice@achronicvoice.com · 3mo ago

"Every time I reach a place of #acceptance, something shifts. The [ #grief ] cycle begins again..There’s no closure when the #trauma is ongoing. I long for #predictability. I crave #stability. Just a moment to breathe.": buff.ly/Zcl84Ml via @cppedsa.bsky.social #ChronicIllness #EDS #NEisVoid

The Quiet Weight of Chronic Illness Grief – EDSAwareness.com

Living with a rare, chronic illness is profoundly isolating—not only physically, but emotionally. Even when surrounded by others, I often feel like a ghost, disconnected from the world around me. I…

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