Chronic Pain Partners - EDS Awareness
LightNews LightNews
banner
cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness
@cppedsa.bsky.social
810 followers 1.2K following 290 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
Pinned
cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · Oct 2
Fresh #EDS News from Chronic Pain Partners includes a new lab, genetic news, a new podcast and more:

buff.ly/UyLbCzo

#EhlersDanloSyndrome #Hypermobility #hEDS #HSD #Zebras #Spoonies #NEISvoid #Medicine #Genetics #Doctors #Nurses #MedEd #Research
EDS Newsletter October 2025: New Study hEDS gene, New EDS Podcast
New EDS Lab, hEDS gene research, IIH, Hormones and EDS, New Podcast, Book with EDS character The Chronic Pain Partners Post Chronic Pain Partners…
buff.ly
Reposted by Chronic Pain Partners - EDS Awareness
cppedsa.bsky.social
Making Misdiagnosis and Misunderstanding a Thing of the Past - CPPs impact on the #EDS community over the last twelve years…

buff.ly/3WvdAzt

#EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #CPP #ChronicIllness #NEISvoid #MedEd #MedSky #Zebras #Support
Making Misdiagnosis and Misunderstanding a Thing of the Past – EDSAwareness.com
Learn the legacy story of EDS awareness through the nonprofit Chronic Pain Partners
buff.ly
November 7, 2025 at 3:14 PM
Reposted by Chronic Pain Partners - EDS Awareness
cppedsa.bsky.social
The Extra Mile: Why This 79-Year-Old Pioneering Physician Ran the Boston Marathon Again in 2025

buff.ly/UPemeY6

#EDS #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #Doctors #Advocacy #Marathon #Zebras #NEISvoid #POTS #Dysautonomia #MCAS #BostonMarathon
The Extra Mile: Why This 79-Year-Old Pioneering Physician Is Running the Boston Marathon – EDSAwareness.com
Dr. Hollick runs the Boston Marathon for two of his patients with Ehlers-Danlos Syndrome who have recently died.
buff.ly
November 4, 2025 at 3:14 PM
Reposted by Chronic Pain Partners - EDS Awareness
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
Reposted by Chronic Pain Partners - EDS Awareness
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
Reposted by Chronic Pain Partners - EDS Awareness
achronicvoice.com
"How do I explain a condition like #EhlersDanlosSyndrome without giving a #biology lecture?..There is no quick..summary that does my experience justice..yet, people ask, well-meaning..unaware of the #EmotionalLabor they’re requesting.": buff.ly/2qGBZFc

via @cppedsa.bsky.social
#ChronicIllness #EDS
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
November 9, 2025 at 8:30 AM
cppedsa.bsky.social
Making Misdiagnosis and Misunderstanding a Thing of the Past - CPPs impact on the #EDS community over the last twelve years…

buff.ly/3WvdAzt

#EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #CPP #ChronicIllness #NEISvoid #MedEd #MedSky #Zebras #Support
Making Misdiagnosis and Misunderstanding a Thing of the Past – EDSAwareness.com
Learn the legacy story of EDS awareness through the nonprofit Chronic Pain Partners
buff.ly
November 7, 2025 at 3:14 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
We drafted a list of all the new documentaries out about EDS and related conditions. Check out the growing list here now:

buff.ly/hJ9BacN

#EhlersDanlos #Hypermobility #hEDS #HSD #MedEd #Zebras #NEISvoid #MECFS #Spoonies #MedSky #Film #Documentary #Doctors
Documentary Films on Ehlers-Danlos Syndrome – EDSAwareness.com
Over the last year, the Ehlers-Danlos Syndromes have been increasingly present in media. Several films have depicted different aspects of the lived experience of families with Ehlers-Danlos Syndromes…
buff.ly
November 5, 2025 at 3:06 PM
cppedsa.bsky.social
The Extra Mile: Why This 79-Year-Old Pioneering Physician Ran the Boston Marathon Again in 2025

buff.ly/UPemeY6

#EDS #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #Doctors #Advocacy #Marathon #Zebras #NEISvoid #POTS #Dysautonomia #MCAS #BostonMarathon
The Extra Mile: Why This 79-Year-Old Pioneering Physician Is Running the Boston Marathon – EDSAwareness.com
Dr. Hollick runs the Boston Marathon for two of his patients with Ehlers-Danlos Syndrome who have recently died.
buff.ly
November 4, 2025 at 3:14 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
Reposted by Chronic Pain Partners - EDS Awareness
harriseve.bsky.social
YES
with one note: please be all your research — including any “resources“ you share with the doctor — are from scrupulously reliable sources.
November 2, 2025 at 6:28 PM
Reposted by Chronic Pain Partners - EDS Awareness
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
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
Reposted by Chronic Pain Partners - EDS Awareness
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 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
Reposted by Chronic Pain Partners - EDS Awareness
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
Reposted by Chronic Pain Partners - EDS Awareness
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
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
Reposted by Chronic Pain Partners - EDS Awareness
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
Reposted by Chronic Pain Partners - EDS Awareness
achronicvoice.com
"But the moment someone asked, “What do you do for #work?” the simplicity crumbled. That question carries so much weight. Most people expect a neat, socially acceptable answer.": buff.ly/bdEov7L

via @cppedsa.bsky.social
#society #career #ChronicIllness #InvisibleIllness
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
October 15, 2025 at 2:31 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
Fresh #EDS News from Chronic Pain Partners includes a new lab, genetic news, a new podcast and more!

buff.ly/UyLbCzo

#EhlersDanloSyndrome #Hypermobility #hEDS #HSD #Zebras #Spoonies #NEISvoid #Medicine #Genetics #Doctors #Nurses #MedEd #Research
EDS Newsletter October 2025: New Study hEDS gene, New EDS Podcast
New EDS Lab, hEDS gene research, IIH, Hormones and EDS, New Podcast, Book with EDS character The Chronic Pain Partners Post Chronic Pain Partners…
buff.ly
October 11, 2025 at 3:14 PM