Advocate
A New EDS Clinic Coming to a Town Near You (Via Telehealth)
Chronic Pain Partners is excited to speak with David Jameson Harris, a former McKinsey consultant, about his latest project, a new Ehlers-Danlos syndrome clinic, hopefully offering access to expert EDS care in several states starting in February 2024. CPP’s Karina Sturm spoke with David Jameson Harris about his new EDS clinic, his goals, and how […]
Filmmaker Suri Ellerton, Her EDS Journey & New Film Highlighting The Challenges Of Disabled Parents
Suri Ellerton is a filmmaker, has three children, and lives with Ehlers-Danlos Syndrome and various comorbid conditions. In this interview with Chronic Pain Partners’ Karina Sturm, Ellerton shares her EDS journey, what it means to be a disabled parent, and how her own experiences relate to her latest film project, “The Game.” Sturm: Hi, Suri! […]
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, […]
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 […]
28 Hours in the Emergency Room
“You have arrived at your destination,” our car’s navigation system announces. Crossing the street, I lean on my partner’s shoulder. An involuntary shudder ripples through me as I succumb to a wave of assaulting nausea followed by a sharp pain in my abdomen. I stare questioningly at the letters “gency” flickering on the neon sign […]
We Are Visible Too, Episode 2: Caitlin O’Donnell
We Are Visible (Too) is an ongoing mini-film series portraying people with EDS all across the globe. In this mini-documentary series, we will continue on the We Are Visible – a feature-length film about people with EDS – journey and add a variety of 5 – 10 minute videos of other people across the country […]
Popular People With Ehlers-Danlos Syndrome
Over the last years, more and more famous Hollywood stars have come out with having been diagnosed with Ehlers-Danlos syndrome, sharing their journey on social media and with the press to raise awareness. For EDS Awareness Month, Chronic Pain Partners’ Karina Sturm put together a list with popular fellow zebras, including Billie Eilish, Jameela Jamil, […]
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. […]
