Kids with Ehlers-Danlos

Title of the image: Research Round-up. Three children dressed in Western attire sit astride horses in front of a setting sun.

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 […]

Several DNA strands in green color.

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 […]

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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 […]

The picture shows a person smiling at the camera, wearing a tie-dye shirt with yellow, pink, and blue colors. They have short hair, glasses, and a black neck brace with white trim. On their face, there is a small flower-shaped patch on their right cheek. They are holding up a feeding tube. Behind them is a background of various stuffed animals.

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 […]

The picture shows a young woman with straight, shoulder-length pink hair and glasses, sitting on a bed. She is wearing a light blue hoodie and black pants. To her right, there is a dog lying on the bed. The room has a red wall behind the bed, and there is a framed picture of a cat above the bed. On the left side of the bed, there is a small round mirror on the wall and a bedside table with a lamp. The bedspread is pink and white with a floral pattern.

Filmmaker Andrew Abrahams on the New EDS Documentary ‘Complicated’

Chronic Pain Partners’ Karina Sturm was honored to speak with Andrew Abrahams, who has been directing the new Ehlers-Danlos documentary Complicated. Abrahams is an award-winning, two-time Academy Award-shortlisted producer/director of creative non-fiction films and the president of Open Eye Pictures. He is also a cinematographer and photographer. His documentary Under Our Skin, which highlights the […]

A pair of Caucasian hands holds the book Bendy Bones and Stretchy Skin: An Ehlers-Danlos Book. The cover of the book shows a watercolor painting of a young Caucasian girl wearing a teal shirt with a small stuffed animal zebra on her head. The background is a mix of soft pinks, purples, and blues.

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, […]

A girl with long blonde hair with light from behind. Title: Take Care of Maya

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, […]

An abstract illustration of grass with buildings and a train flying through the air.

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 […]