Archive for the ‘Awareness’ Category
Posted on December 23, 2022
For our January newsletter, journalist Karina Sturm spoke with rare disease advocate Nthabeleng Ramoeli. Ramoeli was born in Lesotho, a country encircled by South Africa, and lives with Ehlers-Danlos syndromes and many other comorbid conditions. The young woman relentlessly fights for improved access to health care for rare disease patients in her home country and […]
Posted on December 22, 2022
For January’s Chronic Pain Partners post (our monthly newsletter), journalist Karina Sturm spoke with author and fellow EDS warrior, Jessica MacLean. Despite never being able to hold a pencil correctly, MacLean was first published during high school, and she became a writer. The Arizona native’s recently published book, Arizona Rain, tells the stories of her […]
Posted on December 22, 2022
For our January Chronic Pain Partners Post, journalist Karina Sturm spoke with Mitch Martow, an EDS advocate from Toronto, Canada. Martow is best known for being the focus of the 2021 released Canadian EDS documentary Bend or Break. In this interview, you’ll get close to Martow and his humorous side while he shares how he […]
Posted on December 22, 2022
Many people with chronic illnesses, like Ehlers-Danlos syndrome (EDS) or other disabling or deteriorating conditions, are often afraid of the possibility of “ending up in a wheelchair.” It is a real fear. But what if we changed our thinking? Wheelchairs provide freedom; they aren’t the end, but empowering and enabling for the user. And sometimes, […]
Posted on November 29, 2022
For our December newsletter, journalist Karina Sturm interviewed Anoushé Husain. Husain is a civil servant and paraclimber who broke the Guinness Book of World Records for climbing the greatest distance on a climbing wall in one hour, as a female climber with only one hand. She was born with half an arm, has beaten cancer, […]
Posted on November 21, 2022
EDSed is our new series of full-length interviews with international EDS experts. These educational interview series with journalistic (news) quality is complementary to our webinar recordings and another free resource we provide for our community. All films are produced by journalist, and We Are Visible filmmaker Karina Sturm and sponsored by Chronic Pain Partners. You […]
Posted on November 2, 2022
For our November newsletter, journalist Karina Sturm interviewed Brianne Benness, the host of No End In Sight, a podcast about life with chronic illness and a chronically ill person’s journey to diagnosis. She is a co-founder of Stories We Don’t Tell, where she talks about hypermobility, mast cell disorders, and recontextualizing old experiences using new […]
Posted on June 23, 2022
For our July newsletter, the Chronic Pain Partner media team is excited to introduce the EDS community to the new middle-grade* fiction book “Fight + Flight,” which features a character with EDS! Journalist Karina Sturm had the pleasure to talk to author Jules Machias about their life with Ehlers-Danlos syndrome, their career as a writer, […]
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