Chronic Pain Partners - EDS Awareness
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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness
@cppedsa.bsky.social
850 followers 1.2K following 330 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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Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · Dec 30
Help us kickstart 2026 with a donation in John Ferman's memory here today, thank you:

buff.ly/mtpdkn9

#EDS #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #Zebras #Spoonies #Support #MedEd #MedSky #Medicine #HealthNews #NEISvoid
Colorful fundraising graphic. In the center is a clear jar filled with coins, labeled "DONATE." Bright party bunting and confetti decorate the background along with cartoon bursts and a party popper icon. At the top, black text reads, "Help us kick 2026 off with a bang!" In the upper right corner is a circular badge: "EDS Awareness Ehlers-Danlos Syndromes." Along the orange bottom border, the website "WWW.CHRONICPAINPARTNERS.COM" is displayed in blue. The scene is festive and cheerful, encouraging donations for EDS awareness.
cppedsa.bsky.social
Hot off the press, our February edition of Chronic Pain Partners news for zebras:

buff.ly/Yz8aFCG

#EDS #hEDS #HSD #Hypermobility #Zebras #Spoonies #NEISvoid #MedEd #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.
February 11, 2026 at 1:06 PM
cppedsa.bsky.social
Wanted! Two guest writers to write about your experiences with EDS and mobility devices. Paying $100 USD /piece. Send pitches to: contact@karina-sturm.com thanks.

#EDS #hEDS #HSD #Hypermobility #Disability #Mobility #Writers #Writing #Zebras #Spoonies #NEISvoid
A “Wanted!” poster-style graphic advertising for guest writers about EDS and mobility aids. The design looks like an old western wanted poster with a tan paper background, dark border, and two illustrated pointing hands near the top left and top right edges. Text on the poster reads: WANTED! Two guest writers for pieces on your experience with EDS and mobility aids. $100 USD/piece. Send pitches to: contact@karina-sturm.com chronicpainpartners.com A circular logo on the left says “EDS Awareness” with smaller text “Ehlers-Danlos Syndromes.” There are cartoon illustrations of three people using mobility aids: one standing with forearm crutches in the center, one seated in a wheelchair on the right, and one on a recumbent handcycle or adaptive trike on the left. A light-colored dog is lying down near the bottom center.
February 10, 2026 at 1:14 PM
cppedsa.bsky.social
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
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.
February 8, 2026 at 1:14 PM
Reposted by Chronic Pain Partners - EDS Awareness
cppedsa.bsky.social
Book Review: The Chemistry Test by Georgina Frankie featuring a character with EDS and POTS:

buff.ly/lobHVGP

#EDS #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #POTS #Spoonies #Zebras #Fiction #Romance #Disability #Books
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.
January 27, 2026 at 1:14 PM
cppedsa.bsky.social
From Diagnosis Odyssey to Scientific Vision: A New Genetics EDS Lab in Norway Opens Its Doors

buff.ly/Dys6qeP

#EDS #EhlersDanlosSyndrome #hEDS #Hypermobility #HSD #Zebras #NEISVoid #Spoonies #Medicine #Genetics #Doctors #Research #MCAS #POTS #MedSky
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.
February 3, 2026 at 1:14 PM
cppedsa.bsky.social
Hot off the press, our February edition of Chronic Pain Partners news for zebras:

buff.ly/Yz8aFCG

#EDS #hEDS #HSD #Hypermobility #Zebras #Spoonies #NEISvoid #MedEd #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.
February 2, 2026 at 12:32 PM
cppedsa.bsky.social
AWOL Zebra Podcast: Building Community (and Laughs) Around EDS

buff.ly/ofignWQ

#EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Zebras #Spoonies #NEISvoid #ChronicIllness #Patients #Support
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."
February 1, 2026 at 1:14 PM
Reposted by Chronic Pain Partners - EDS Awareness
cppedsa.bsky.social
In which Donna Sullivan shares a small win for the #EDS community with our EDS Unplugged Podcast hosts in Episode 2:
www.chronicpainpartners.com/podcast/

#Hypermobility #hEDS #HSD #Zebras #NEISVoid #Spoonies #COMPLICATED #MedSky #Doctors #podcast #Medicine
January 2, 2026 at 3:32 AM
cppedsa.bsky.social
Update On Gene Linked to Hypermobile EDS - the Norris Lab published their final study results in 2025:

buff.ly/y0TmObZ

#EDS #hEDS #HSD #Hypermobility #Zebras #Research #Doctors #medicine #Genetics #NEISvoid #Science #MedSky
Promo graphic with teal and orange colors, containing text and a double helix DNA image. At the top left is a label: "BREAKING NEWS", and at the top right is a circular logo "EDS Awareness - Ehlers-Danlos Syndromes". Main headline in large orange box: "UPDATE FROM THE NORRIS LAB ON HEDS GENE" Below, the poster says: "A new study, led by Dr. Cortney Gensemer (an EDS patient herself), marks a real genetic breakthrough in hEDS research. Her study focused on the kallikrein (KLK) gene family, as this family of 15 genes are involved in numerous biological processes."
January 31, 2026 at 12:14 PM
Reposted by Chronic Pain Partners - EDS Awareness
cppedsa.bsky.social
New App Can Help Screen for EDS in Canada

buff.ly/xTVdnhJ

#EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #Screening #Medicine #MedEd #Canada #Doctors #Nurses #Diagnostics #zebras #NEISvoid #MedSky
Promotional graphic about a new hypermobility screening app in Canada for Ehlers-Danlos Syndromes (EDS) awareness. At the top left, there is an EDS Awareness logo. Main text says, “New Hypermobility Screening App in Canada.” The central image shows a man with his arm outstretched while a woman uses a smartphone to take a photo or video of him. A yellow highlighted effect is around the phone, emphasizing its use. There is an inset photo of a goniometer (joint measuring device) with a red “X” over it, suggesting the app replaces it. Text at the bottom explains that doctors at the Kite Research Institute in Canada developed an app for hypermobility screening, which can make EDS assessments faster by removing the need for a goniometer. The website “www.chronicpainpartners.com” is listed at the bottom, along with an icon of a stylized measuring gauge.
January 7, 2026 at 1:06 PM
cppedsa.bsky.social
Cerebral Venous Outflow Disorders: What it is and Why EDS Patients Should Know About it

www.chronicpainpartners.com/cerebral-ven...

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #IIH #CSFLeak #Chiari #AAI #CCI #Headache #Spoonies #Zebras #MedEd #MedSky #Doctors #neurology
Infographic about Cerebral Outflow Disorder, related to Ehlers-Danlos Syndromes (EDS). At the top left is a circular EDS Awareness logo. The text reads: “Cerebral Outflow Disorder: Signs can include: Pulsatile Tinnitus Pressure Headaches IIH Brain Fog Vision Problems” There is an image of a person’s head in profile with a glowing neural network over the brain, and graphic icons of upward and downward arrows suggesting blood flow. The bottom text on a teal background reads: “What it is and Why EDS Patients Should Know About it chronicpainpartners.com”
January 30, 2026 at 1:14 PM
cppedsa.bsky.social
Research Round-up, Edition Six - in which we bring you a variety of research angles involving the Ehlers-Danlos Syndromes as we close out 2025:

buff.ly/vsHqh5m

#EDS #hEDS #HSD #Hypermobility #Zebras #Spoonies #MCAS #Dysautonomia #POTS #NEISvoid #Medicine #MedSky #Doctors #Genetics
A large stack of books, laboratory glassware, globes, and scattered papers arranged in the center of a dusty outdoor setting. Surrounding this pile are several people on horseback, dressed in cowboy attire, swinging lassos as if rounding up the items. There is dust being kicked up around the horses, creating a dramatic scene. In the upper left corner, a circular logo reads "EDS Awareness – Ehlers-Danlos Syndromes." Text across the image says: Research Roundup!
January 29, 2026 at 12:10 PM
cppedsa.bsky.social
“Watch Out For Mum” – Wrongful Child Abuse Allegations Harms Whole Family in the Netherlands

buff.ly/puQVunj

#EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #Zebras #Spoonies #NEISvoid #Medicine #Doctors #Nurses #FII #MedicalKidnap #MedSky #Genetics #Autism #ADHD
The Hellenbrand family of four standing together outside next to a military-style vehicle. The family includes a woman with short red hair, wearing glasses and light green clothes, a man in a maroon hoodie and jeans, a boy in a suit and tie with white sneakers, and a girl in a long pink dress with glasses.
January 28, 2026 at 1:06 PM
cppedsa.bsky.social
Book Review: The Chemistry Test by Georgina Frankie featuring a character with EDS and POTS:

buff.ly/lobHVGP

#EDS #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #POTS #Spoonies #Zebras #Fiction #Romance #Disability #Books
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.
January 27, 2026 at 1:14 PM
Reposted by Chronic Pain Partners - EDS Awareness
cppedsa.bsky.social
“Watch Out For Mum” – Wrongful Child Abuse Allegations Harms Whole Family in the Netherlands

buff.ly/puQVunj

#EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #Zebras #Spoonies #NEISvoid #Medicine #Doctors #Nurses #FII #MedicalKidnap #MedSky #Genetics #Autism #ADHD
The Hellenbrand family of four standing together outside next to a military-style vehicle. The family includes a woman with short red hair, wearing glasses and light green clothes, a man in a maroon hoodie and jeans, a boy in a suit and tie with white sneakers, and a girl in a long pink dress with glasses.
December 11, 2025 at 12:10 PM
cppedsa.bsky.social
Donna Sullivan introduces some of the better-known EDS specialists who emerged over the last ten years in podcast Episode 2: Medically Complex Children:

www.chronicpainpartners.com/episode-2-me...

#EDS #hEDS #HSD #Hypermobility #MedEd #MedSky #FII #Zebras #RareDisease #Spoonies #Doctors
January 19, 2026 at 6:56 AM
Reposted by Chronic Pain Partners - EDS Awareness
achronicvoice.com
"Now, people hesitate to share, worried they’ll burden me or that their #problems pale in comparison. But pain is #pain. I want to know about your #life. I want to #support you..I want to carry your #worries too. I miss feeling needed.": buff.ly/1kD5vpt

via @cppedsa.bsky.social
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…
buff.ly
January 10, 2026 at 8:30 PM
cppedsa.bsky.social
The Hidden Disabilities Sunflower Lanyard: Making the Invisible Visible

buff.ly/zTVAuva

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Disability #Autism #ADHD #AuDHD #Dyslexia #Dysgraphia #Dyscalculia #Dysautonomia #MCAS #Mastocytosis #Fibromyalgia #Spoonies #MedSky #Zebras
Illustration featuring a green sunflower lanyard, a badge with sunflowers and the words "Hidden Disabilities," a passport, and a person carrying a tote bag. The background has the headline: "The Sunflower Lanyard: Making the Invisible Visible." A circular logo reads "EDS Awareness Ehlers-Danlos Syndromes." Text at the bottom explains: Wearing an optional sunflower lanyard in public places signals staff to lend extra help, time, or understanding as one navigates their business. Use of the lanyard is voluntary; disclosure is at the wearer’s discretion. It is especially helpful for those with EDS, autism, and other conditions, and is now recognized in several countries. Website at the bottom: www.chronicpainpartners.com
January 13, 2026 at 1:14 PM
cppedsa.bsky.social
New App Can Help Screen for EDS in Canada

buff.ly/xTVdnhJ

#EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #Screening #Medicine #MedEd #Canada #Doctors #Nurses #Diagnostics #zebras #NEISvoid #MedSky
Promotional graphic about a new hypermobility screening app in Canada for Ehlers-Danlos Syndromes (EDS) awareness. At the top left, there is an EDS Awareness logo. Main text says, “New Hypermobility Screening App in Canada.” The central image shows a man with his arm outstretched while a woman uses a smartphone to take a photo or video of him. A yellow highlighted effect is around the phone, emphasizing its use. There is an inset photo of a goniometer (joint measuring device) with a red “X” over it, suggesting the app replaces it. Text at the bottom explains that doctors at the Kite Research Institute in Canada developed an app for hypermobility screening, which can make EDS assessments faster by removing the need for a goniometer. The website “www.chronicpainpartners.com” is listed at the bottom, along with an icon of a stylized measuring gauge.
January 7, 2026 at 1:06 PM
Reposted by Chronic Pain Partners - EDS Awareness
cppedsa.bsky.social
Research Round-up, Edition Six - in which we bring you a variety of research angles involving the Ehlers-Danlos Syndromes as we close out 2025:

buff.ly/vsHqh5m

#EDS #hEDS #HSD #Hypermobility #Zebras #Spoonies #MCAS #Dysautonomia #POTS #NEISvoid #Medicine #MedSky #Doctors #Genetics
A large stack of books, laboratory glassware, globes, and scattered papers arranged in the center of a dusty outdoor setting. Surrounding this pile are several people on horseback, dressed in cowboy attire, swinging lassos as if rounding up the items. There is dust being kicked up around the horses, creating a dramatic scene. In the upper left corner, a circular logo reads "EDS Awareness – Ehlers-Danlos Syndromes." Text across the image says: Research Roundup!
December 27, 2025 at 12:14 PM
cppedsa.bsky.social
In which Donna Sullivan shares a small win for the #EDS community with our EDS Unplugged Podcast hosts in Episode 2:
www.chronicpainpartners.com/podcast/

#Hypermobility #hEDS #HSD #Zebras #NEISVoid #Spoonies #COMPLICATED #MedSky #Doctors #podcast #Medicine
January 2, 2026 at 3:32 AM
cppedsa.bsky.social
Help us kickstart 2026 with a donation in John Ferman's memory here today, thank you:

buff.ly/mtpdkn9

#EDS #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #Zebras #Spoonies #Support #MedEd #MedSky #Medicine #HealthNews #NEISvoid
Colorful fundraising graphic. In the center is a clear jar filled with coins, labeled "DONATE." Bright party bunting and confetti decorate the background along with cartoon bursts and a party popper icon. At the top, black text reads, "Help us kick 2026 off with a bang!" In the upper right corner is a circular badge: "EDS Awareness Ehlers-Danlos Syndromes." Along the orange bottom border, the website "WWW.CHRONICPAINPARTNERS.COM" is displayed in blue. The scene is festive and cheerful, encouraging donations for EDS awareness.
December 30, 2025 at 1:14 PM
cppedsa.bsky.social
Research Round-up, Edition Six - in which we bring you a variety of research angles involving the Ehlers-Danlos Syndromes as we close out 2025:

buff.ly/vsHqh5m

#EDS #hEDS #HSD #Hypermobility #Zebras #Spoonies #MCAS #Dysautonomia #POTS #NEISvoid #Medicine #MedSky #Doctors #Genetics
A large stack of books, laboratory glassware, globes, and scattered papers arranged in the center of a dusty outdoor setting. Surrounding this pile are several people on horseback, dressed in cowboy attire, swinging lassos as if rounding up the items. There is dust being kicked up around the horses, creating a dramatic scene. In the upper left corner, a circular logo reads "EDS Awareness – Ehlers-Danlos Syndromes." Text across the image says: Research Roundup!
December 27, 2025 at 12:14 PM
cppedsa.bsky.social
Happy Holidays from the media team at Chronic Pain Partners, we look forward to continuing to support #zebras in 2026.

#EDS #hEDS #HSD #Hypermobility #EDSAwareness #Spoonies #EhlersDanlosSyndrome
December 24, 2025 at 2:57 AM
cppedsa.bsky.social
For anyone not yet aware, we are missing our Founder and President John Ferman dearly this Christmas 2025:

buff.ly/5zJaMRd

#EDS #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #Zebras #NEISvoid #Support #CPP #MedEd #Advocacy #MedSky
Memorial graphic featuring two photos of John Ferman, an older man with neatly combed hair, both showing him smiling. At the top, text in large blue letters reads "IN MEMORY." Below, it says, "We miss you dearly this Christmas." There are small images of doves at the top corners and decorative holiday greenery with red bows framing the text. "John Ferman," appears in bold white letters, described as the founder of Chronic Pain Partners. A small, lit candle illustration is centered between the two photos. In the left photo, the man wears a lavender shirt and a lanyard with name tags; in the right, he wears a black shirt promoting Ehlers-Danlos Syndrome awareness, also with a name tag. The overall tone is warm, respectful, and holiday-themed.
December 22, 2025 at 12:32 PM