School Children
Research Round-up, Edition Five: Pediatrics
Welcome back to Research Round-Up. This time, we’re looking at research that focuses on Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) in the young ‘uns, from birth to age 18. While some of the effects of EDS can be the same on adults as on the little ones, sometimes, the kiddos have more to […]
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 […]
EDS Back to School Special – Prep for K-12, College & Accommodations
If you are a student or a parent of a child who needs extra support for their illness and/or disability accommodations for school or to enter and succeed in grammar school up to college, this is for you and just in time with our list of helpful resources. For Students K-12 Read our resourceful guide […]
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 […]
Pey Carter and Daughter Abigail Speak About Their EDS Children’s Book
Pey Carter, a public speaker and author from Eau Claire, WI, and their daughter, Abigail Bailey, have a children’s book about Ehlers-Danlos Syndrome in the works: Bendy Bones and Stretchy Skin: An Ehlers-Danlos Story. In addition, Pey just finished a Kickstarter for an Ehlers-Danlos coloring book and is working on a memoir of their own. […]
