EDS Diagnosis
Advocate Nthabeleng Ramoeli on her EDS journey, EDS care in Lesotho, and why she established an NGO to help all rare disease patients
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 […]
Author Jessica MacLean on how writing saved her and what she learned from her ancestors
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 […]
Mitch Martow on his EDS journey and the documentary Bend or Break
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 […]
The Road to Recovery Was Paved By Me and My Wheelchair: Q&A With Ryann Mason
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, […]
Para climber Anoushé Husain on “believing in the impossible”, her cancer diagnosis, EDS journey, and the sports she loves
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, […]
New Zealand EDS Patients told “It’s all in Your Head”
BY: THOMAS HEATON AND DAVID MAIDA . . . . The syndrome causes abnormal collagen synthesis, which means that although the body produces it, the collagen is weaker and causes the joints and its connective tissue to become loose. Auckland-based Dr Fraser Burling, an expert in chronic soft tissue injuries, said […]
My Wife Had EDS and Did Not Know IT! – 8th Year Anniversary
This website and its free programs are dedicated to the memory of Carol and thousands like her – who suffer from undiagnosed Ehlers-Danlos… We were married for 41 years. You’d think that after all of that time you would know everything there was to know about a person. – I knew Carol was a loving […]
