Managing Ehlers-Danlos

Website Revamp: Chronic Pain Partners – A New Look for EDS Awareness

We are thrilled to announce the launch of our newly revamped website at the same location, www.chronicpainpartners.com! As a nonprofit dedicated to raising awareness about Ehlers-Danlos Syndrome (EDS) and providing vital resources to the community, we have always strived to offer comprehensive support to patients, caregivers, and healthcare providers. With the recent website overhaul, we’re […]

A book cover of Symptomatic with an illustration of a person sitting in between pieces of a puzzle

Book Review of New EDS Book Symptomatic 

The Ehlers-Danlos Syndromes (EDS) are complex and multifaceted conditions that have, for decades, challenged both patients and medical professionals alike. Over recent years, several books have been published on EDS. For instance, Dianna Jovin’s Disjointed and Christie Cox’s Holding It All Together, among many others. Recently, Symptomatic joined the list. Edited by EDS experts Dr. […]

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Documentary Films on Ehlers-Danlos Syndrome

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 and comorbid conditions around the globe. The following is a dynamic list of documentary films on EDS and its comorbid conditions based on the release date.  Ehlers-Danlos […]

www.EDS411.com

Find Answers Faster: The EDS411 Living Library

Discover the EDS411 Living Library App  Imagine a place where you can find reliable, community-sourced information about Ehlers-Danlos Syndrome (EDS) without the endless search through disorganized forums or the distracting noise of social media. Welcome to EDS411 Living Library, your ultimate resource for navigating EDS with confidence and ease brought to you by EDS S.H.A.R.E. […]

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Top Ten Reasons EDS SUCKS!

The votes are in! One hundred and sixty-seven (167) of you responded to our survey about the things that SUCK about EDS. What made it into the top spot as the worst of all? Where did your dissatisfactions rank? Scroll down to find out! How we tallied the results: Each respondent received the same 19 […]

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Podcasts on Ehlers-Danlos Syndrome

With growing awareness about the Ehlers-Danlos syndromes, varying resources in different types of media developed over the last years. Our Chronic Pain Partners’ Team is collecting their favorite books, podcasts and films on EDS and its comorbid condition in a series of listicles you will find on our website over the next months. We have […]

A woman with brown hair is hugging her son, who is in a hospital bed.

A Mother’s Day Shout Out from An EDS Mom and The Producer of Complicated 

As a parent, it is hard to witness your child suffering with symptoms and physical pain. As mothers, we are often looked to, to make everything better, right? When my kids started having medical issues, I quickly learned that there was no parenting book to teach how to comfort and support your child when an […]

Making Misdiagnosis and Misunderstanding a Thing of the Past

What Chronic Pain Partners has done for the community lately.