Chronic Pain Partners

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Chronic Pain Partners/EDS Awareness is a resource and news source by and for the EDS community.

Chronic Pain Partners/EDS Awareness, a US-based non-profit 501(c)(3) organization, was created in 2011 to support people with Ehlers-Danlos syndromes. It is an online resource for the Ehlers-Danlos Syndrome community, their caregivers, medical professionals, and everyone interested in learning more about the genetic connective tissue disorder. We help create independent, local EDS support groups, host live webinars to help educate our members, caregivers and healthcare providers, and launched a CME program for physicians and another one for nurses, and lately, we also produce high-quality video content and documentary films that will embrace “Nothing about us without us” and will all be produced by disabled filmmakers to ensure an accurate depiction of disability on screen! We also produce a bimonthly newsletter with original articles only on our website. Find out more: https://www.chronicpainpartners.com/eds-awareness-educational-programs-and-newsletter/

10/12/2026

Has your voice been hoarse, breathy, or just different lately? EDS might be to blame!

We talk a lot about connective tissue showing up everywhere (joints, skin, gut). But the voice box? Not the first guess for most of us!

Here’s what the research is starting to show:
🎙️ In a 2025 survey, 400 of 437 adults with EDS reported voice symptoms in the past year
🎙️ Among those employed or in school, over 90% reported social limitations and missed more than 4 days because of their voice
🎙️ A 2026 scoping review of 13 studies found patterns like dysphonia, muscle tension dysphonia, and structural changes such as cricoarytenoid joint subluxation
(One caveat: people with voice issues may have been more likely to take the survey, so the numbers may run high.)

If your voice has been changing, you’re not imagining it, and it’s worth bringing up with your care team. A speech-language pathologist can be a great place to start.

Who can help, what you can try at home, and more are in the full article at www.chronicpainpartners.com/articles

Swipe through, then save this for later or send it to someone who needs it. 🤍

Alt text:
Slide 1: Title slide reading “Is your voice changing? why EDS might be to blame,” with the Chronic Pain Partners name and a large sound wave graphic.
Slide 2: Text explaining that even people with EDS can be surprised when a new symptom, like voice box trouble, turns out to be connected. Emerging research suggests the link between EDS and voice problems may be more significant than previously thought.
Slide 3: “Connective Tissue in and Around the Voice Box.” Explains that the vocal folds are made of connective tissue and that the surrounding muscles, cartilage, lamina propria, and ligaments support them, so connective tissue issues can affect any of these.
Slide 4: “Voice Issues Reported.” Results of a 2025 survey: 400 of 437 adults with EDS reported voice symptoms in the past year. About 20% sought treatment from a speech-language pathologist, and 37% of those had daily hoarseness. Of those in school (322), 97% reported social limitations from their voice. Of those employed (360), 93% did. Over 90% missed more than 4 days of school or work. A note says people with voice issues may have been more likely to participate.
Slide 5: Summary of a 2026 scoping review of 13 studies (2009–2025). Symptoms include dysphonia (raspiness, hoarseness, breathiness, reduced range, strain, fatigue, aphonia) and muscle tension dysphonia. Structural findings include cricoarytenoid joint subluxation or fixation, arytenoid prolapse, hyolaryngeal instability, and mucosal and microvascular fragility.
Slide 6: “Sound familiar? Who can help? What can you do at home? And more info in the article at www.chronicpainpartners.com/articles or visit the link in our bio.” Includes prompts to like and bookmark, and an EDS Awareness Ehlers-Danlos Syndromes logo.

10/05/2026

If you live with Ehlers-Danlos syndrome, you may be entitled to workplace accommodations under the ADA. Employers are required to provide reasonable accommodations, and that can mean far more than an ergonomic chair.

Swipe through for the basics:
✔️ Physical safety and comfort: sitting options, lifting exemptions, braces and mobility aids
✔️ Flexibility for flares: remote or hybrid work, adjusted hours, time for appointments, a gradual return after procedures

More accommodations to ask for (or implement) today at www.chronicpainpartners.com/articles 💙

What have you asked for at work that actually made a difference? Someone else might need the idea. 👇

EhlersDanlos EDS ChronicIllness WorkplaceAccommodations ADA DisabilityRights InvisibleIllness ChronicPain ChronicIllnessAdvocate Zebra

Alt text:
Slide 1: Carousel cover reading “Tips for workplace accommodations for Ehlers-Danlos syndrome,” with a right-pointing arrow. A cartoon person with black hair and a teal shirt sits at a laptop beside a steaming mug. Handle: .
Slide 2: Slide titled “EDS & Americans with Disabilities.” Text explains that EDS is a complex chronic condition that varies between people and often disables them. Under the ADA, employers must provide reasonable accommodations, so people with EDS may be entitled to workplace modifications. Common accommodations follow.
Slide 3: Slide titled “Prioritizing physical safety and comfort,” listing accommodations that reduce strain: exemption from heavy lifting or access to lifting equipment, the option to sit rather than stand, breaks to stand, stretch, or walk, avoiding repeated or prolonged positions like bending, kneeling, reaching, or overhead work, ergonomic equipment like an adjustable chair, footrest, or workstation, and permission to use braces, mobility aids, or supportive devices. A cartoon person holds a clipboard.
Slide 4: Slide titled “Flexibility that supports long-term employment.” Text explains that symptoms and flares can be unpredictable, so flexibility in when, where, or how someone works helps them stay employed. Listed accommodations: remote or hybrid work, flexible start and end times for morning fatigue, extra or frequent breaks, time for medical appointments and unexpected health issues, flexible deadlines during flares or emergencies, temporary workload or hours adjustments, the option to make up missed hours, and a gradual return to a normal schedule after flares or procedures.
Slide 5: Text reads “Creating an EDS-friendly work environment and,” continuing onto the next slide. A cartoon person makes an OK hand gesture.
Slide 6: Text reads “Accessibility beyond the desk. Want to know how?” with a teal right-pointing arrow. A cartoon person is partly visible at the left edge.
Slide 7: Closing slide reading “Visit www.chronicpainpartners.com/articles to read more accommodations you can ask for or implement today!” A cartoon person waves one hand and holds a phone in the other.

10/01/2026

🎓 Congratulations, Hailee Munno!

We’re celebrating Hailee’s graduation from our pilot summer writing internship and mentorship program!

Thank you, Hailee, for all your wonderful contributions to the EDS community. Great job! 🙌🏻

➡ Interested? Keep an eye out for announcements about future writing internship programs in the coming months! ✨

09/28/2026

Increasing research shows that there is a significant overlap between neurodivergence and Ehlers Danlos syndrome, including autism spectrum disorder.

Seeking out an autism evaluation as an adult can feel daunting, so we wrote an article to help guide you and feel prepared on what to expect.

Swipe and read our recent article to learn more about preparing for an autism evaluation.

Alt Text
Image 1:
Teal background with white title text reading “Getting Tested for Autism as an Adult” and orange subtitle “tips and tricks.” An illustrated woman in a white lab coat holds a clipboard showing a checklist with an infinity symbol. EDS Awareness logo appears in the bottom left corner.
Image 2:
Teal background with white title “Autism and Ehlers Danlos Syndrome” and orange chain link icon. White body text explains that 39% of autism patients report co-occurring EDS and HSD, with increasing acknowledgement of overlap between the conditions. Concludes with “If you’ve wondered if you could be part of that 39%, here are some tips for pursuing an evaluation.” EDS Awareness logo in bottom right.
Image 3:
Teal background with white heading “Screening Tools.” Text explains that screening tools are available but not diagnostic, and can help identify patterns to discuss with providers. Lists three tools in orange and white text: RAADS-R (Ritvo Autism Asperger Diagnostic Scale–Revised), CAT-Q (Camouflaging Autistic Traits Questionnaire), and AQ (Autism Spectrum Quotient). EDS Awareness logo bottom right.
Image 4:
Teal background with white title “The Process.” Lists and describes 3 main steps in numbered orange text: 1) Finding a provider (illustrated with person holding clipboard), 2) Preparing for the appointment (illustrated with research symbol and magnifying glass), 3) The actual evaluation (illustrated with two people in conversation). Each step includes explanatory text.
Image 5:
Teal background with large white text reading “For More Tips and Resources, Check Out the Article At:” followed by the URL “https://chronicpainpartners.com/articles” in orange. Illustration of woman holding clipboard. EDS Awareness logo bottom left.

09/23/2026

Back to school looks different when chronic pain and EDS are part of the picture. 📚

Other families are grabbing notebooks and pencils, you might be organizing medical documents, coordinating 504 plans, and strategizing accommodations.

Success in school for kids with EDS often means redefining what success actually is - creating space for your child to learn, grow, and belong with their body’s needs honored.

Swipe through for four concrete ways parents can advocate for their child with EDS this school year. And head to the link in bio for the full checklist, detailed accommodation ideas, and more resources.
Your kid’s different school year is still a successful one. 💙

https://www.chronicpainpartners.com/the-other-back-to-school-checklist-redefining-a-successful-school-year-for-kids-with-eds/

Alt text:

Slide 1: Title slide with school supplies illustration. Slide 2: Lists how back-to-school checklists differ for kids with EDS—including medical documents, 504 plans, teacher meetings, and accommodation tools. Slide 3: Explains that pain, fatigue, and health issues require redefining what makes a successful school year. Slide 4: States that dynamic and invisible illnesses aren’t well supported in traditional education structures, asks “So what can parents do?” Slide 5: Four numbered action items—identify resources, educate and communicate, establish social and emotional access as a need, help your child fit in. Slide 6: “Tips & Resources” directing to chronicpainpartners.com/articles for detailed checklists and accommodation ideas.

09/21/2026

We’re Hiring! 🧠✍️

is looking for a volunteer science and medical writer to help translate emerging research and complex medical topics into clear, accurate, and engaging content for patients.
The role includes:
- Writing up to 3 high-quality articles per year
- Translating medical research into accessible, patient-friendly language
- Reviewing and interpreting scientific papers and emerging research
- Collaborating with our editorial team on topic selection
- Ensuring accuracy while keeping readability and engagement in focus

Interested? Share your CV with:
[email protected]

and learn more about the position at https://www.chronicpainpartners.com/volunteer-job-posting-science-medical-writer/

If you have writing and science background and want to make research accessible to the chronic pain community, we’d love to hear from you!

09/17/2026

if you can relate, you’re in the right place🤍

Link in our bio to read more

[video description: a video of a shadow of a wheelchair against colorful lights and the overlayed text reads, “there is a certain pressure to perform being well when you are chronically ill that isn’t talked about often. it looks like trying to prove:
you’re trying hard enough
you can keep up
you’re positive enough
you don’t need special treatment
you’re not giving up.
but masking your illness is for the benefit of other people’s comfort, at your expense. it seems like you have to be sick“the right way” which just means in a digestible way. but you deserve to just be, however you show up, however that may be.]

09/15/2026

Join us September 22nd at 7pm with Allergist/immunologist, Dr. Anne Maitland, as she takes a closer look at emerging research connecting tissue fragility with the immune and nervous systems. This FREE webinar breaks down the role of inflammatory and mast cell responses and explains how these processes may contribute to pain, hypersensitivity, autonomic symptoms, and many of the seemingly disconnected challenges experienced by people with EDS.

Link to the webinar registration or in our bio:

https://us06web.zoom.us/meeting/register/4mWeCbJiSk2EkhkYJhqJ6g

09/13/2026

We had the privilege of having , author of an upcoming book titled, The Quiet Parts of Disability, share her experience with the administrative toll disability can have.

Swipe through and read the article to learn more and follow ‘s work!

Image 1 (Title Slide):
Title slide featuring a photograph of Lilly Grossman, a woman with long brown hair wearing a pink textured shirt, smiling at the camera. Text reads: “Lilly Grossman, Founder of Beyond the Box Advocacy, Disability Advocate, Researcher, Writer” above the main heading “Disability is an Administrative Experience Too” with subtitle “The quiet parts of disability.” The Chronic Pain Partners logo appears in the bottom left corner.
Image 2 (Through the Disability Lens):
Text slide with heading “Through the Disability Lens” followed by a paragraph explaining that disability is as much an administrative experience as a medical one, discussing challenges around coordinating care, navigating systems, and maintaining access to support as the “quiet parts of disability.”
Image 3 (Behind the Scenes):
Text slide with heading “Behind the Scenes” describing the ongoing invisible work of coordination, problem-solving, scheduling, and communication that others often don’t see until disabled people produce visible accomplishments.
Image 4 (Inequity):
Text slide with heading “Inequity” discussing how disabled people must fight battles able-bodied people don’t face, and how systemic changes can occur over minor issues while denying longstanding access needs.
Image 5 (Barriers):
Text slide with heading “Barriers” explaining how barriers appear ordinary because they’re embedded in routine administrative processes, and how decisions carry consequences far beyond the document itself.
Image 6 (Evolution of Policy):
Text slide with heading “Evolution of Policy” celebrating how disability policy has transformed lives while noting that policy continues evolving and barriers created through policy can be reduced through policy.
Image 7 (About the Author):
Biographical slide with Lilly Grossman’s photograph (same as Image 1) and text describing her as a disability policy advocate, researcher, writer, and founder/CEO of Beyond the Box Advocacy. Text mentions her forthcoming book “The Quiet Parts of Disability” and describes her work exploring how policies and systems shape independence and opportunity for people with disabilities.

09/09/2026

Welcome to our new series where we will go over each subtype of Ehlers Danlos syndrome, its genetic cause, prevalence, symptoms, and diagnostic criteria.

Image 1:
“Cover slide with teal background and repeating “EDS SUBTYPES” text. White rounded rectangle in center contains text in black and orange reading “LEARN ABOUT THE DIFFERENT SUBTYPES OF EHLERS DANLOS SYNDROME.” Small circular EDS Awareness logo in bottom right corner. Social media icons (heart, comment, share) in bottom left.”
Image 2:
“Educational infographic titled “the subtypes of ehlers danlos syndrome” with teal background. Bold white heading reads “ARTHROCHALASIA EHLERS-DANLOS SYNDROME (aEDS)” followed by white body text explaining: aEDS is caused by genetic variants in COL1A1 and COL1A2 genes; people with aEDS typically have a pathogenic variant in one copy of the COL1A1 or COL1A2 gene; aEDS is an ultra-rare disorder affecting less than 1 in 1 million people. Below is a bulleted list of key signs and symptoms: Congenital bilateral hip dislocation, Generalized joint hypermobility, and Recurrent joint dislocations and subluxations. Credit: at bottom.”
Image 3:
“Educational infographic titled “the subtypes of ehlers danlos syndrome” with teal background and white text. Bold heading “ARTHROCHALASIA EHLERS-DANLOS SYNDROME (aEDS)” followed by diagnostic criteria section. Lists the combination of major and minor criteria required for aEDS diagnosis, including Major Criteria (Congenital bilateral hip dislocation, Severe generalized joint hypermobility with multiple dislocations/subluxations, and Skin hyperextensibility) and Minor Criteria (Muscle hypotonia, Kyphoscoliosis, Radiologically mild osteopenia, Tissue fragility including atrophic scars, and Easily bruisable skin). Credit: at bottom.“

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5210 Sunset Ridge
Mason, OH
45040

Website

https://www.chronicpainpartners.com/

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