Articles

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EDSed Episode 2: Dr. Lilian Holm on Physical Therapy & EDS

Posted on January 27, 2023

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 can […]

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Small Fiber Neuropathy is a Common Feature in Hypermobile EDS, Research Finds

Posted on January 25, 2023

New research by a German group of scientists published in the European Journal of Neurology seeks to understand  if there is an underlying common cause among hypermobile EDS (hEDS), small fiber neuropathy (SFN), and postural orthostatic tachycardia syndrome (POTS). Their research sheds light on a possible common mechanism behind those three conditions.  SFN, POTS & […]

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Wrap Yourself in a Blanket of Love: How to Foster Self-Compassion

Posted on January 23, 2023

Self-compassion (and self-care) are sometimes misunderstood as selfish, self-cherishing, or self-indulgent, but this couldn’t be further from the truth, especially when you live with chronic illness or chronic pain such as Ehlers-Danlos syndrome (EDS). Self-compassion is the act of offering ourselves the same care and compassion we would give to others. It is simply the […]

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Surviving the Rollercoaster of EDS and Chronic Fatigue: Tips and Tricks for Managing the Boom-and-Bust Cycle

Posted on December 26, 2022

When you’re doing okay, it can feel like a high, a return to normalcy even. It is hard to figure out the level of functioning that is going to allow you to get things done without making your symptoms send you into another flare. It’s a tiny little fine line between doing too much and […]

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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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