Chronic Pain Partners

Chronic Pain Partners 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/

We’re thrilled to welcome Hailee Munno as our 2026 Summer Writing Intern and the very first participant in this program!...
06/01/2026

We’re thrilled to welcome Hailee Munno as our 2026 Summer Writing Intern and the very first participant in this program!

This initiative was created to support and mentor university and graduate students in strong academic standing who are living with EDS/HSD and related conditions.

Through this initiative, interns will receive training in:

• Evidence-based health communication
• Research translation
• Patient advocacy & education
• Professional interviewing skills
• One-on-one mentorship & editorial guidance

We’re excited to help cultivate the next generation of patient advocates and health communicators within the chronic illness community! 💜

May EDS Myth-busting with Chronic Pain Partners...In case you missed our earlier carousels, meet four EDSers who defy ap...
06/01/2026

May EDS Myth-busting with Chronic Pain Partners...

In case you missed our earlier carousels, meet four EDSers who defy appearances and some expectations with various types of EDS and HSD we featured earlier in May, EDS Awareness Month. (This post brings them all together in one place.)

These vignettes make it clear that appearances can be very deceiving - sometimes we can do more than you think, other times much less. It really varies, not just between people, but for the same person even on different days.

EDS and HSD do not discriminate. People from all backgrounds are affected all over the world and to every degree and in every way. Start looking for those "zebras"!

https://www.chronicpainpartners.com/beyond-the-myths-four-people-talk-about-the-reality-of-living-with-eds-hsd/

For May, EDS Awareness Month, we are sharing the many ways we show up in the world both with and despite EDS and HSD. Sh...
05/29/2026

For May, EDS Awareness Month, we are sharing the many ways we show up in the world both with and despite EDS and HSD. Showing how it's important to never assume almost anything about us, or about anyone for that matter.

While we may not always keep up with those without a connective tissue disease, we often can do more than some people think, though usually for a price. And sometimes we can do less. It really varies.

And just like zebras, no two people with EDS or HSD are alike, even with the same type. But we are a very ambitious group on the whole, often accomplishing a lot of things while managing much more than most people realize. And sometimes more than we expect ourselves!

Meet artist: Kaleena Deshawn, aka

Chronic Pain Partners / EDS Awareness is very happy to welcome TWO new writers to our tiny but mighty media team! Please...
05/21/2026

Chronic Pain Partners / EDS Awareness is very happy to welcome TWO new writers to our tiny but mighty media team!

Please join us in welcoming research specialist and health communicator Amy Weintraub, and clinic research coordinator and disability advocate Tayler Goectau.

We're happy to add their experience and talent. Stay tuned for their contributions as we chug along.

For May, EDS Awareness Month, we are sharing the many ways we show up in the world both with and despite EDS and HSD. Sh...
05/20/2026

For May, EDS Awareness Month, we are sharing the many ways we show up in the world both with and despite EDS and HSD. Showing how it's important to never assume almost anything about us, or about anyone for that matter.

While we may not always keep up with those without a connective tissue disease, we often can do more than some people think, though usually for a price. And sometimes we can do less. It really varies. Not only between people, but for the same person on different days.

And just like zebras, no two people with EDS or HSD are alike, even with the same type. But we are a very ambitious group on the whole, often accomplishing a lot of things while managing much more than most people realize.

Meet Jeevan Mann, biomedical researcher and EDS advocate.

For May, EDS Awareness Month, we are sharing the many ways we show up in the world both with and despite EDS and HSD. Sh...
05/13/2026

For May, EDS Awareness Month, we are sharing the many ways we show up in the world both with and despite EDS and HSD. Showing how it's important to never assume almost anything about us, or about anyone for that matter.

While we may not always keep up with those without a connective tissue disease, we often can do more than some people think, though usually for a price. And sometimes we can do less. It really varies across all domains and across time.

And just like zebras, no two people with EDS or HSD are alike, even with the same type. But we are a very ambitious group on the whole, often accomplishing a lot of things while managing much more than most people realize.

Meet Jacqueline Teti, CPP Editor-in-chief and Director of Programs:

Wait - your doctor said what??~! We’ve all heard some doozies from our doctors over the years as EDS/HSD patients, diag...
05/12/2026

Wait - your doctor said what??~!

We’ve all heard some doozies from our doctors over the years as EDS/HSD patients, diagnosed or not. Things like:

• ‘You can’t have that, you’d be in a wheelchair.’
• ‘There’s nothing we can do for you.’
• ‘Only women/men/________ have that.’”

What are some of the outrageous things your doctors have said to you? Drop them in a comment below. (No actual doctor's names please for liability reasons, just their whacky words!)

We'll gather these up in an article to share later in May. (We'll keep you anonymous, don't worry!)

Address

5210 Sunset Ridge
Mason, OH
45040

Website

Alerts

Be the first to know and let us send you an email when Chronic Pain Partners posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Category