Archive for the ‘newsletter’ Category

blog-post-thumbnail
PT Elan Schneider on Neuroplasticity and New Approaches to Treat Chronic Pain

Posted on February 28, 2023

Widespread chronic pain is one of the main symptoms for people with any type of Ehlers-Danlos syndrome and can be debilitating. At the same time, many common treatment options, particularly with pain medication, lead to side effects. But what if we could reduce our pain without any negative consequences? Chronic Pain Partners’ Editor-in-Chief Karina Sturm […]

Read More

blog-post-thumbnail
Unaccommodating Accommodations

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 […]

Read More

blog-post-thumbnail
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 […]

Read More

blog-post-thumbnail
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 […]

Read More

blog-post-thumbnail
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 […]

Read More

blog-post-thumbnail
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 […]

Read More

blog-post-thumbnail
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 […]

Read More

blog-post-thumbnail
Chronic Illness Advocate Brianne Benness about her EDS journey and #NEISVoid

Posted on November 2, 2022

For our November newsletter, journalist Karina Sturm interviewed Brianne Benness, the host of No End In Sight, a podcast about life with chronic illness and a chronically ill person’s journey to diagnosis. She is a co-founder of Stories We Don’t Tell, where she talks about hypermobility, mast cell disorders, and recontextualizing old experiences using new […]

Read More

Get Webinar Announcements And Our FREE Guide

Support EDS Awareness

See all upcoming events

Current Poll

How long until you received a proper diagnosis for EDS?

View Results

Loading ... Loading ...
%d bloggers like this: