Chronic Pain Partners - EDS Awareness

Overcoming Barriers With Creativity: Watch Lego Oma – EDSAwareness.com Rita Ebel, the focus of the new Chronic Pain Partners (CPP) short film Lego Oma, has found one of the most innovative ways to fix inaccessibility: she builds wheelchair ramps from Lego!

Overcoming Barriers With Creativity: Watch Lego Oma by @KarinaSturm

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#EDS #HSD #hypermobility #Disability #DisCo #Zebras #Spoonies #Accessibility #Access #NEISvoid #POTS #MCAS #Lego #Legos

Chronic Illness Apps: Why Use Them and Ones to Try for EDS Management – EDSAwareness.com List of the best health apps for managing the complexities of chronic illness - why they're helpful and ones to try, especially with EDS.

Chronic Illness Apps: Why Use Them and Ones to Try for EDS Management - our team reviewed and listed the top 25 for you:

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#EDS #EhlersDanlosSyndrome #hEDS #Hypermobility #HSD #NEISVoid #Spoonies #Zebras #Disability #Patients #Dysautonomia #POTS

Orange promo poster about scoliosis care and the Schroth Method. Top text: “Introducing the Schroth Method for scoliosis care”. Top-left logo reads: “EDS Awareness” and “Ehlers-Danlos Syndromes”. Left side graphics show a large white outline of a curved spine & pelvis illustration, with gray lightning-bolt shapes and two large question marks. Photo on the right shows two adult women in an exercise/therapy room. One (light skin) in black athletic shorts and a black sports bra is barefoot and facing a wooden wall-bar, with arms raised holding the bars; knees are bent in a partial squat. Dr. Campesi (light skin) is behind her, wearing a black long-sleeve top, teal leggings, and black sneakers and appears to be guiding her posture with hands at the upper back and hip area. Small white text reads: “Here we share an expert Q&A on scoliosis care in EDS featuring Caroline Campesi, DPT” Teal text at bottom: “chronicpainpartners.com”

Introducing Schroth Therapy: An Expert Q&A on Scoliosis Care in EDS with Dr. Campesi

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#EDS #HSD #zebras #Scoliosis #Physio #MedSky #MedEd

Please stop sending pitches thanks. This has been filled.

Hi. The position is filled and we do not want anymore pitches. Can you please remove the ad from your listings and network thank you?

There seems to be some overlap

bsky.app/profile/cppe...

PS Our current writing position has been filled for now thanks. 2/19/26.

Thank you for your interest everyone, the paid writing position has been filled thanks. As of:

Feb 19, 2026.

Update: the position has been filled. Thanks.

And. I stand corrected - she got back to me to say the position is filled, thanks.

We're going to remove this post.

And it's still open. No deadline. We can use writers every month. So submit your pitches to Karina as directed.

✌️

Not yet. So, until filled? I just checked with our editor. Stay tuned.

Also, look into and rule out celiac disease , hypothyroidism and SIBO if haven't yet. They can all contribute to malabsorption, even subclinically. Especially if have a lot of diarrhea. 🥺

This is not uncommon in our community alas, no, sorry. Some end up needing Meyers cocktails, or NG tubes and more. Try also skin patches or lotions (for magnesium, e.g.).

Madora Pennington even resorted to IM Vitamin C shots herself. Blog:

Https://lessflexible.com

COMPLICATED Children with complex illnesses and their families are labeled “too complicated” or torn apart by accusations of medical child abuse.

You can now stream the #EDS movie COMPLICATED from Open Eye Pictures at home for $14.98 USD. (Unsure about abroad.) I did, and bawled my eyes out, OMG! It's powerful! Have mast cell meds ready!
#zebras #MedSky #doctors #spoonies

openeyepix.myshopify.com/products/com...

It didn't do anything for me either (Jan), but I didn't really have neuropathy. And our biochemistry can really vary for so many reasons.

Hope you got some relief somehow.

HEDS

Immune dysregulation

A promotional graphic for “EDS Unplugged” with bold text, photos of three women, and a large gold number 3. The main headline at the top reads: “EDS, MEDICAL RESEARCH & NEURODIVERGENCE”. A large gold “3” appears on the right side. The words “EDS UNPLUGGED” are in the center-left, with “EDS” in large black letters and “UNPLUGGED” in white letters on a black slanted rectangle. The name “JAN GROH” appears near the bottom in large pink letters. The phrase “sponsored by” appears near the center-right, next to a circular logo that reads: “EDS Awareness” and “Ehlers-Danlos Syndromes”. On the left is a woman with medium-to-dark skin tone wearing a black sleeveless outfit, holding a megaphone to her mouth. Near the middle is another woman with dark skin tone wearing black, arms raised, holding a forearm crutch. On the lower right is a close-up portrait of Jan, a light-skinned person with short curly brown hair and large glasses, wearing a patterned jacket over a dark top.

EDS Unplugged Podcast Episode 3: Neurodivergence with Jan Groh, author of the OhTWIST blog and co-author of the EDS Toolkit for Doctors

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#EDS #hypermobility #hEDS #HSD #NEISvoid #Zebras #Spoonies #Autism #ADHD #AuDHD #POTS #MCAS #MedEd #MedSky

Awareness poster with teal background. The top left has a white circle logo with the words "EDS Awareness Ehlers Danlos Syndromes." Next to it, bold text says: "Is hEDS just... 'All in your head'? - Study says no!" On the right, there's an emoji of a frustrated face. Below the text on the left, there's an illustration of an angry or stressed woman with fists raised and lines indicating tension around her head, plus a comic-style speech bubble with symbols ("#@%!"). In the center, a megaphone and a close-up photo of a magnifying glass over the word "EVIDENCE". At the bottom, white text reads: "EDS specialist Dr. Pradeep Chopra confirms decades of patients’ lived experiences," with "decades" in italic. Yellow fireworks accent the corners. At the bottom, website: www.chronicpainpartners.com

“It’s All in Your Head”: New Study Confirms What hEDS Patients Have Been Told for Decades

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#EDS #Hypermobility #hEDS #EhlersDanlosSyndrome #HSD #Zebras #NEISvoid #Medicine #Doctors #MedEd #Nurses #Psychiatry #MedSky

A square promotional graphic with a dark golden ribbon banner at the top reading "Will you be our champion?", a bronze dollar sign on the upper right, the EDS Awareness logo upper left. "We need your support" over a light blue ganner shownig a set of stick figure drawings cut out under a laundry lign with little tags dangling saying "We need you" in blue, red and green. At bottom: www.chronicpainpartners.com

Will you be our champion? We need your support to keep bringing you the latest and greatest EDS news, thanks!

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#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Zebras #Spoonies #NEISvoid #MedEd #MedSky #MedTwitter #Medicine #Doctors

Background is orange, and image shows close-up of multiple transparent test tubes, some filled with a blue liquid, with a pipette dispensing liquid into one of the tubes. Text on the image reads: NEW STUDY REVEALS Immune Dysfunction in Hypermobile Ehlers-Danlos Syndrome Published in ImmunoHorizons, this additional research provides yet another fresh biological insight into hypermobile Ehlers–Danlos syndrome (hEDS), the most common but least understood form of EDS. HEDS is a multi system condition leading to dozens of comorbid conditions. This study found clear markers for system immune dysregulation in patients with hEDS. Chronic Pain Partners www.chronicpainpartners.com Circular logo top right says: EDS Awareness Ehlers-Danlos Syndromes

New Study Reveals Immune Dysfunction in Hypermobile Ehlers–Danlos Syndrome - another solid result from the Norris Lab at MUSC:

www.chronicpainpartners.com/new-study-re...

#hEDS #EDS #EhlersDanlosSyndrome #Hypermobility #HSD #Science #Medicine #Research #MedEd #Doctors #Immunology #MCAS #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).

Building a Supportive and Caring Medical Team No Matter Where You Live - guest post by Jon Rodis

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#EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Spoonies #Zebras #Patients #ChronicIllness #NEISvoid #MedSky

My Wife Had EDS and Did Not Know IT! We were married for 41 years.  You’d think that after all of that time you would know everything there was to know about a person. –  I knew Carol was a loving person who would do anything she could…

My wife had EDS and did not know it! Why this EDS Awareness site was born... by the late John Ferman, founder:

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#EhlersDanlosSyndrome #EDS #Hypermobility #HSD #Fibro #Fibromyalgia #Depression #Pain #NEISvoid #MedEd #MedSky #Doctors #Genetics #rheumatology #Nurses

A teal promotional graphic for a February newsletter, featuring a black-and-white zebra lying down in the center-left. Text on the image: FEB NEWS From Chronic Pain Partners Check out what’s in store in our February Newsletter… In the top-right is a circular logo that says: EDS Awareness Ehlers-Danlos Syndromes There’s also a yellow arrow at the bottom pointing to the right.

Hot off the press, our February edition of Chronic Pain Partners news for zebras:

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#EDS #hEDS #HSD #Hypermobility #Zebras #Spoonies #NEISvoid #MedEd #MedSky

Promotional graphic featuring a smiling man in a navy suit jacket and light blue collared shirt, with science-themed illustrations and text about EDS awareness. His hair is short and dark, with dark eyebrows, brown eyes, and a short dark beard and mustache. His skin tone appears medium tan. Text at top says: “From rare EDS patient to scientist...” A circular logo at top left says: “EDS Awareness” and underneath: “Ehlers-Danlos Syndromes” Large text across the middle says: “Meet Jeevan Mann” A paragraph in the lower left says: “After being misdiagnosed twice, he pursued medicine, then research. Now he advocates for fellow patients.” Bottom text says: “www.chronicpainpartners.com” Graphics include a stylized lab flask with orange liquid, a beaker with blue liquid, a large antibody-like shape with small virus icons, and an outline of a microscope and lab flask in the lower right.

From Rare EDS Patient to Researcher: An Interview with Jeevan Mann

www.chronicpainpartners.com/from-patient...

#EDS #hEDS #Hypermobility #HSD #Genetics #Science #medicine #MedEd #Zebras #Advocacy #Research #MedSky #Doctors

At the top, a white banner reads: Book Review: The Chemistry Test. On the left is the book cover. The title, in large orange script, says The Chemistry Test. Below it, smaller text says: there are some things books can’t teach . . . The cover illustration shows a couple sitting close together in a cozy room; the woman is in a wheelchair. In the background are lab items (like a microscope and glassware), a pink backpack on the floor, and a vase of flowers. At the bottom of the cover is the author’s name in orange: GEORGINA FRANKIE. On the right side of the graphic, dark teal text reads: How Penny and Cam learn to not judge themselves - or their books - by their “covers”. Below that: Book Review by Kate Schultz, CPP Media Team. Near the bottom right is a circular logo that says EDS Awareness, with smaller text: Ehlers-Danlos Syndromes. Across the very bottom in large text: chronicpainpartners.com.

Book Review: The Chemistry Test by Georgina Frankie featuring a character with EDS and POTS:

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#EDS #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #POTS #Spoonies #Zebras #Fiction #Romance #Disability #Books

Logo for Brigant Laboratory showing dark blue text on a light gray background reading BL LABORATORY. The B and L are extra large, with a DNA twist running along the vertical length of the L, and molecular connectors coming off over the B.

From Diagnosis Odyssey to Scientific Vision: A New Genetics EDS Lab in Norway Opens Its Doors

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#EDS #EhlersDanlosSyndrome #hEDS #Hypermobility #HSD #Zebras #NEISVoid #Spoonies #Medicine #Genetics #Doctors #Research #MCAS #POTS #MedSky

A teal promotional graphic for a February newsletter, featuring a black-and-white zebra lying down in the center-left. Text on the image: FEB NEWS From Chronic Pain Partners Check out what’s in store in our February Newsletter… In the top-right is a circular logo that says: EDS Awareness Ehlers-Danlos Syndromes There’s also a yellow arrow at the bottom pointing to the right.

Hot off the press, our February edition of Chronic Pain Partners news for zebras:

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#EDS #hEDS #HSD #Hypermobility #Zebras #Spoonies #NEISvoid #MedEd #MedSky

A smiling woman sitting on an exercise ball with arms outstretched, wearing a white tank top and black shorts. There is a cat lying on a nearby chair with a striped blanket. Behind her, banners on the wall say "AWOL Zebra." On the table next to her are towels, some white models or tools, and a glass. The top of the image displays the website "www.chronicpainpartners.com." Text at the bottom reads: "Interview with CHristie @AWOL Zebra" In the lower right corner is a logo that says "EDS Awareness Ehlers-Danlos Syndromes."

AWOL Zebra Podcast: Building Community (and Laughs) Around EDS

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#EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Zebras #Spoonies #NEISvoid #ChronicIllness #Patients #Support