Archive for the ‘Community’ Category

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EDS, Dating & Internalized Ableism

Posted on August 19, 2023

I sat in my car on the edge of the San Francisco Bay during a huge storm staring at my phone, finger hovering over the button on a dating app to post a profile that, if pushed, had the potential to change my life. I had recently moved back to the Bay Area and was […]

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Filmmaker Suri Ellerton, Her EDS Journey & New Film Highlighting The Challenges Of Disabled Parents

Posted on June 30, 2023

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! […]

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New Netflix Documentary ‘Take Care of Maya’ Highlighting Wrongful Child Abuse Allegations

Posted on June 24, 2023

[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, […]

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When Formal Education with Ehlers-Danlos Syndrome Isn’t Possible: 3 Tips

Posted on June 23, 2023

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 […]

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Bendy Bones and Stretchy Skin: An Ehlers-Danlos Book

Posted on June 22, 2023

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 […]

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We Are Visible Too, Episode 2: Caitlin O’Donnell

Posted on June 5, 2023

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 […]

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Popular People With Ehlers-Danlos Syndrome

Posted on May 13, 2023

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, […]

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Pey Carter and Daughter Abigail Speak About Their EDS Children’s Book 

Posted on April 28, 2023

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. […]

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