Articles

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The Six Steps of Proper Pacing

Posted on December 26, 2022

Pacing techniques, such as the “spoon theory,” can be incredibly helpful for managing energy levels and preventing overexertion. This involves breaking activities into smaller chunks and taking breaks as needed to allow for rest and recovery. Sounds easy enough, right? UGH- NO!! You kinda need to plan to do this successfully to know which spoons […]

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Advocate Nthabeleng Ramoeli on her EDS journey, EDS care in Lesotho, and why she established an NGO to help all rare disease patients

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 […]

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Author Jessica MacLean on how writing saved her and what she learned from her ancestors

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 […]

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Mitch Martow on his EDS journey and the documentary Bend or Break

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 […]

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The Road to Recovery Was Paved By Me and My Wheelchair: Q&A With Ryann Mason

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, […]

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Para climber Anoushé Husain on “believing in the impossible”, her cancer diagnosis, EDS journey, and the sports she loves

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, […]

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The 12 Gifts of Blissmas: This Holiday Season’s Gift Guide for the EDS Warrior

Posted on November 22, 2022

Let’s be blunt: chronic illness and pain sucks. Many of us don’t only live with Ehlers-Danlos Syndrome (EDS), but also have a variety of comorbid conditions such as postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS), affectionately known as the EDS trifecta. Living with all of these takes ‘chronic illness and pain’ […]

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EDSed Episode 1: The Norris Lab

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 […]

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