Kids with Ehlers-Danlos
Why Is It So Hard To Get A Genetics Appointment For My Child?
If you are a parent who is trying to get your child evaluated for Ehlers-Danlos Syndrome, you may have already discovered that it is often not a straightforward process. The Ehlers Danlos Society estimates it can take 10-12 years on average for a diagnosis. That can be a lifetime for a child. However, obtaining a […]
The World Premiere of Complicated: The Film That Named Itself!
It took nine years to get to that Red Carpet. In late February, our documentary film, Complicated, premiered at the prestigious Slam Dance Film Festival in Los Angeles. The film is a call to action, an expose of some of the darker challenges that young people and their families living with complex symptoms of Ehlers-Danlos […]
Neurodivergence and Hypermobility: The Autism-EDS Connection
Chronic Pain Partners introduced the topic of neurodivergence and Hypermobility Spectrum Disorders (HSD) and Ehlers-Danlos Syndrome (EDS) in our first newsletter this year (January 2025), but autism has been shown to co-occur with EDS for many years, with an early published case dating back as far as 1993 and another in 2011. Neurodivergence comprises a […]
Research Round-Up, Edition 2
→ BREAKING NEWS: Study finds biomarker that could lead to a blood test for hEDS & HSD ← Welcome back to the Research Round-Up, a summary of medical news you can use. We’ve got a lot of great research for you this month, so giddy up and git going! Yee-haw! If you have an article […]
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 […]
Complicated – the must-watch documentary on Ehlers-Danlos Syndrome
A new documentary on Ehlers-Danlos Syndrome, Complicated, will soon be released. Chronic Pain Partners was honored to preview the film, which dives deep into many of our community’s challenges. Directed by award-winning and Oscar-shortlisted filmmaker Andrew Abrahams and co-produced by TCAPP board member and advocate Donna Sullivan, this film is the most comprehensive and accurate […]
Books 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 are […]
Children’s Book about Ehlers-Danlos Published
It’s here! Bendy Bones and Stretchy Skin: An Ehlers-Danlos Book by Pey Carter and their daughter Abigail Bailey hits the virtual shelves on January 23, 2024. Chronic Pain Partners has previously covered the details of the book–where the idea came from, how it took shape, the advocacy Pey does that is portrayed in the book, […]
