EDS Diagnosis
Part One: EDS & Psychological Medical Trauma: An Introduction
[Content warning: trauma, PTSD, mental healthcare, negative clinician behavior, difficult medical encounters] Have you ever read something that left you speechless? I have so many thoughts and feelings about this article – ones that I can’t express with any sort of coherence at the time. What I can say: clinicians READ THIS (finger pointing down […]
EDS, Dating & Internalized Ableism
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 […]
The First Steps of Medicine: Unraveling S.O.A.P. Notes from a First-Year Medical Student
Many of us can often feel like we are ‘professional patients’ managing our care as a seemingly never-ending full-time job of its own. But for a moment, try picturing yourself as a first-year medical student. What tactics can you imagine you might need to learn to keep the volumes of scientific and medical data organized […]
Researchers Found New Possible Causative Gene For HEDS: MIA3
Exciting news from Poland! Researchers from the Department of Clinical Genetics at Nicolaus Copernicus University in Torún, Poland, released a preprint of research that may hold the answers to the cause of hypermobile Ehlers-Danlos Syndrome (hEDS) for a part of the patient population. Specifically, Junkiert-Czarnecka et al. investigated the MIA3 gene in people with hEDS […]
Kimby Maxson And The Bendy Twisty Zebra: The Story Behind The Book
The story of Rose, a young girl zebra, is the heart of Kimby Maxson’s children’s book The Bendy Twisty Zebra. Rose, her friends, and the book’s encouraging message are all based on Kimby’s real-life experiences navigating the world of doctors, hospitals, and diagnoses for her daughter, Jade. Kimby, a massage therapist and bodywork specialist from […]
Surgery Prep: Meeting Your EDS Hospital Stay Needs
How to be prepared & stay safe when having a hospital stay with Ehlers-Danlos syndrome (EDS) This article will give an overview of ways you can prepare for a hospital stay when you have EDS, as well as tips on surgical prep and your own patient advocacy. People with Ehlers-Danlos syndrome (EDS) often need surgery […]
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 […]
