Kids with Ehlers-Danlos
Research Round-Up, volume 2
Welcome back to the Research Round-Up, a summary of EDS 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 you’d like to see in Research Round-Up, submit it to kate@chronicpainpartners.com. Looking for more resources about EDS? Check […]
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, […]
New Netflix Documentary ‘Take Care of Maya’ Highlighting Wrongful Child Abuse Allegations
[CW: Suicide] Netflix has just released the highly anticipated documentary, “Take Care of Maya,” which unveils the heart-wrenching journey of the Kowalski family as they confront and challenge wrongful child abuse allegations. Directed by Henry Roosevelt, also known for his role in “The Social Network,” the documentary delves deep into the lives of the Kowalskis, […]
When Formal Education with Ehlers-Danlos Syndrome Isn’t Possible: 3 Tips
As discussed in the previous articles in this series, attending school with Ehlers-Danlos Syndrome (EDS) can be extremely difficult but possible with creative adaptations. Sometimes, however, accommodations aren’t enough, and formal education is impossible. The United States has compulsory school attendance laws, which vary significantly by state, but all take the truancy of school-aged children […]
Bendy Bones and Stretchy Skin: An Ehlers-Danlos Book
In May, we published an article about a new children’s book about EDS, invisible illness, and disability–Bendy Bones and Stretchy Skin: An EDS Story. In this book, a young girl named Abigail struggles with her Ehlers-Danlos Syndrome and the effect it has on her life. Some of Abigail’s friends and classmates don’t understand why she […]
