Archive for the ‘Invisible Disabilities’ Category
Posted on April 19, 2024
Chronic Pain Partners’ Karina Sturm was honored to speak with Andrew Abrahams, who has been directing the new Ehlers-Danlos documentary Complicated. Abrahams is an award-winning, two-time Academy Award-shortlisted producer/director of creative non-fiction films and the president of Open Eye Pictures. He is also a cinematographer and photographer. His documentary Under Our Skin, which highlights the […]
Posted on August 31, 2023
This is the second article in our series covering psychological medical trauma. The first article provided an introduction to what concepts of psychological medical trauma exist and the newly-created concept of clinician-associated trauma. It also introduced a study regarding hEDS patients and clinician-associated trauma. This article will look deeper into the details of this study […]
Posted on August 20, 2023
[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 […]
Posted on June 30, 2023
Suri Ellerton is a filmmaker, has three children, and lives with Ehlers-Danlos Syndrome and various comorbid conditions. In this interview with Chronic Pain Partners’ Karina Sturm, Ellerton shares her EDS journey, what it means to be a disabled parent, and how her own experiences relate to her latest film project, “The Game.” Sturm: Hi, Suri! […]
Posted on February 26, 2023
I want to be okay. Some days I am. But some days, it feels like my words slosh about disjointed. My eyelids are heavy shades that won’t stay open. Pain suffuses every joint in my body, and the throbbing in my head makes it impossible to tolerate light or noise. Day-to-day is unpredictable, sometimes moment […]
Posted on February 22, 2023
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 […]
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 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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