Chronic Pain Partners - EDS Awareness
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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness
@cppedsa.bsky.social
820 followers 1.2K following 300 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
Posts Replies Media Videos
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”
November 26, 2025 at 1:06 PM
cppedsa.bsky.social
Reprising our best EDS Holiday Hacks: Twelve Tips for Setting Yourself Up for Success by Realigning Your Expectations

www.chronicpainpartners.com/eds-holiday-...

#EhlersDanlos #EDS #hEDS #HSD #Hypermobility #Fibro #Fibromyalgia #MECFS #NEISvoid #CPP #Spoonie #Spoonies #Zebras #Holidays
A festive holiday-themed graphic. At the top, there is a gold ribbon banner with a red bow and the words "EDS Holiday Hacks." To the left, a logo reads "EDS Awareness - Ehlers-Danlos Syndromes." Below, a warm dinner table scene features a lit candle surrounded by greenery, with wine glasses and plates in the background. Over this image, text says "Twelve Tips for Setting Yourself Up for Success." At the bottom, a blue strip contains the website address "www.chronicpainpartners.com."
November 24, 2025 at 3:32 PM
cppedsa.bsky.social
We share the following with heavy hearts: In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness

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#EhlersDanlosSyndrome #EDS #hypermobility #hEDS #HSD #zebras #Spoonies #NEISvoid #POTS #MCAS #ChronicPain #Support #Autism #ADHD #Genetics
Memorial image featuring two photographs of John Ferman in recent years, shown smiling in both photos. One photo shows him wearing a purple button-up shirt and a lanyard with a name tag. The other photo shows him in a black t-shirt with "Ehlers-Danlos Syndrome Awareness" text and a zebra graphic, wearing a conference badge. Above the photos, the text reads "IN LOVING MEMORY" in large, bold blue letters, with two illustrated tan doves flying near the words. At the bottom, on a solid blue background decorated with subtle flowers, the text states: "John Ferman Founder of Chronic Pain Partners" The white circule EDS Awareness logo
November 17, 2025 at 7:10 PM
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."
November 6, 2025 at 3:10 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."
November 3, 2025 at 3:32 PM
cppedsa.bsky.social
Interview with Georgina Frankie: Author of “The Chemistry Test”, a romance featuring an EDSer as protagonist without the pity:

buff.ly/lYfYnmv

#EDS #hEDS #HSD #Hypermobility #Fiction #Romance #writing #Disability #Spoonies #Zebras #NEISvoid
Color illustration of a couple in a lab showing a young woman in a wheelchair with a cat on her lap face to face with a gentleman with glasses seated next to hear so they are at the same head height. A microscope and beakers show on a counter. A pink backpack on the floor. "The Chemistry Test" by Georgina Frankie. "there are some things books can't teach...".
October 31, 2025 at 2:14 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.
October 30, 2025 at 2:10 PM
cppedsa.bsky.social
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).
October 29, 2025 at 2:07 PM
cppedsa.bsky.social
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
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
October 27, 2025 at 5:44 AM
cppedsa.bsky.social
Celebrate #InvisibleDisabilitiesWeek Oct 19-25, 2025 with us by checking out our new podcast episode on that very subject!

buff.ly/OhQXbZY

#EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #POTS #MCAS #Spoonies #Zebras #NEISVoid #Disability #DisCo
Podcast promotional graphic. The background is white with various images and text placed around. In the upper left is a logo reading "EDS Awareness - Ehlers-Danlos Syndromes" with blue and orange coloring. The text nearby says "Presents... PODCAST". A large speech bubble on the right contains the text "EPISODE 1: Invisible Disabilities" in blue letters. Across the center, the text "EDS UNPLUGGED" is written in bold black letters on a diagonal, with a gold ribbon weaving through the letters. There are two images of Black women in black athletic wear: one on the left holding a megaphone, and another on the right standing with a mobility aid and one arm raised. At the bottom right is a picture of Kate Schultz with glasses giving a thumbs up, wearing a purple shirt with colorful images on it. Below the central text, in blue, it says: "With guest: Kate Schultz".
October 19, 2025 at 2:14 PM
cppedsa.bsky.social
Interview with Georgina Frankie: Author of “The Chemistry Test”, a romance featuring an EDSer as protagonist without the pity:

buff.ly/lYfYnmv

#EDS #hEDS #HSD #Hypermobility #Fiction #Romance #writing #Disability #Spoonies #Zebras #NEISvoid
Color illustration of a couple in a lab showing a young woman in a wheelchair with a cat on her lap face to face with a gentleman with glasses seated next to hear so they are at the same head height. A microscope and beakers show on a counter. A pink backpack on the floor. "The Chemistry Test" by Georgina Frankie. "there are some things books can't teach...".
October 18, 2025 at 3:14 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.
October 15, 2025 at 2:06 PM
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."
October 10, 2025 at 2:14 PM
cppedsa.bsky.social
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
October 8, 2025 at 6:02 AM
cppedsa.bsky.social
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).
October 4, 2025 at 3:14 PM
cppedsa.bsky.social
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
September 28, 2025 at 2:14 PM
cppedsa.bsky.social
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.
September 27, 2025 at 3:14 PM
cppedsa.bsky.social
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.
September 26, 2025 at 2:14 PM
cppedsa.bsky.social
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.
September 25, 2025 at 2:10 PM
cppedsa.bsky.social
September is Pain Awareness Month and we're not letting it go by unnoticed...

www.chronicpainpartners.com/september-is...

#EDS #hEDS #HSD #Hypermobility #Fibro #Pain #MedEd #MedSky #Zebras #NEISvoid #Spoonies #IIH #Migraine #Arthritis #POTS #MCAS #ChronicIllness #Disability
Diagram of a transparent human body highlighting internal organs with a red circular area around the abdomen, suggesting pain. At the top left, there's a circular logo for "EDS Awareness – Ehlers-Danlos Syndromes." Large white text reads: "September is... Pain Awareness Month." The bottom section features an illustrated pain scale with a needle pointing towards the high end (in orange/red), with the website "www.chronicpainpartners.com" overlaid. Various emojis on either side range from contented to in distress. Below the scale, it says, "THE PAIN SCALE." The image focuses on raising awareness about pain, particularly related to Ehlers-Danlos Syndromes, during September.
September 17, 2025 at 10:51 PM
cppedsa.bsky.social
Will you be our champion? We need your support to keep bringing you the latest and greatest EDS news, thanks!

buff.ly/4cUot2T

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Zebras #Spoonies #NEISvoid #MedEd #MedSky #MedTwitter #Medicine #Doctors
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
September 16, 2025 at 2:14 PM
cppedsa.bsky.social
Missed our prior newsletters? You can catch up on all of them here in our archives, any time you like:

buff.ly/SOlLwKE

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Zebras #NEISvoid #Doctors #MedEd #Medicine #POTS #MCAS #Dysautonomia #Genetics #MedSky
A promotional graphic for EDS Awareness, which stands for Ehlers-Danlos Syndromes Awareness. The top left corner features a circular logo with "EDS Awareness" and "Ehlers-Danlos Syndromes" written inside. The background shows an illustration of a newspaper. The text reads, "Missed a prior newsletter?" Below, there are icons of file folders, with a central folder icon inside an orange circle featuring a download arrow. At the bottom, the text says, "Download or read any of our earlier editions here!"
September 15, 2025 at 2:32 PM
cppedsa.bsky.social
“It’s All in Your Head”: New Study Confirms What hEDS Patients Have Been Told for Decades

buff.ly/L6W8GGv

#EDS #Hypermobility #hEDS #EhlersDanlosSyndrome #HSD #Zebras #NEISvoid #Medicine #Doctors #MedEd #Nurses #Psychiatry #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
September 14, 2025 at 2:14 PM
cppedsa.bsky.social
Help us keep this show on the road! We need your support to keep bringing you the latest and greatest EDS news, can you help?

buff.ly/4cUot2T

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Zebras #Spoonies #NEISvoid #MedEd #MedSky #MedTwitter #Medicine #Doctors
Fundraising graphic for EDS Awareness. The image features a hand clicking a "DONATE" button, green dollar bills, a red heart, and an open hand. In the top right corner, there is a logo that reads "EDS Awareness Ehlers-Danlos Syndromes." At the bottom, a blue bubble contains the text: "We can really use your donations thanks!" Below that, the website "WWW.CHRONICPAINPARTNERS.COM" is displayed. The overall message is a request for donations to support EDS (Ehlers-Danlos Syndromes) awareness.
September 7, 2025 at 2:14 PM
cppedsa.bsky.social
“Primary Care Without the Gaslighting”: How Chronius Health Is Rethinking Care for People with EDS and Complex Conditions

buff.ly/LAtmdRt

#EDS #EhlersDanlosSyndrome #PrimaryCare #hEDS #HSD #Hypermobility #NEISvoid #POTS #MCAS #Dysautonomia #LongCOVID #Doctors #Disability #MedSky
Promotional graphic with an orange background featuring a cheerful zebra holding a stethoscope, fireworks illustrations, and multiple text elements. In the top left corner, there's a circular logo for "EDS Awareness Ehlers-Danlos Syndromes." At the top center, there's a banner labeled "chroniushealth." The main message reads: "is offering: 'Primary-care without the gaslighting'." The zebra has a speech bubble that says, "Could it really be true? They 'get' zebras??" The word "WOW!" is displayed in large, colorful letters at the bottom. Below that is the website: "WWW.CHRONICPAINPARTNERS.COM."
September 6, 2025 at 3:14 PM