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EDS Expenses Exposed: Report Peeks at Financial Burden of Living with Ehlers-Danlos
If you or someone you know is dealing with Ehlers-Danlos Syndromes (EDS), understanding the financial impact is crucial, and until now could not be quantified by research. A recent study’s results published in early 2025 recaps the highlights. The new report, The Financial Impact of Ehlers-Danlos Syndromes on Patients in the United States in 2022 […]
Overcoming Barriers With Creativity: Watch Lego Oma
People with Ehlers-Danlos syndrome (EDS) often face physical barriers limiting access and opportunity, yet our community is incredibly resilient and adept at finding creative solutions to overcome these challenges. These obstacles, often centered around mobility limitations and chronic pain, are familiar territory for many of us. But Rita Ebel, the focus of the new Chronic […]
Research Round-Up, Edition 2
→ BREAKING NEWS: Study finds biomarker that could lead to a blood test for hEDS & HSD ← Welcome back to the Research Round-Up, a summary of medical news you can use. We’ve got a lot of great research for you this month, so giddy up and git going! Yee-haw! If you have an article […]
Part 5: Healing the Hurt: How To Handle Clinician-Associated Trauma
Over the past several months, Chronic Pain Partners has published a series of articles about clinician-associated trauma based on the paper “Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes” by Colin M.E. Halverson, Heather L. Penwell, and Clair A. Francomano. The last four Chronic Pain Partners articles […]
Making Misdiagnosis and Misunderstanding a Thing of the Past
What Chronic Pain Partners has done for the community lately.
Part Four: The Rise of Clinician-Associated Trauma in the Doctor-Patient Relationship
Content warning: This article discusses difficult encounters and experiences with medical clinicians that some readers may find upsetting or triggering. Please take care of yourself as you see fit. I did not receive an hEDS [hypermobile Ehlers-Danlos syndrome] diagnosis until I was 29 years old, and until 2023, I did not feel one ounce […]
HEDS or HSD: Study Question Diagnostic Criteria
“The 2017 [hypermobile Ehlers-Danlos Syndrome diagnostic] criteria were introduced to improve diagnostic specificity but have faced criticism for being too stringent and failing to adequately capture the multisystemic involvement of hEDS,” states a paper titled “Looking back and beyond the 2017 diagnostic criteria for hypermobile Ehlers-Danlos syndrome: A retrospective cross-sectional study from an Italian reference […]
Know Your Love Language? Learn to Speak it Well Despite Chronic Illness
Did you know each of us shows affection and love in different ways? No matter who you might be cuddled up to this Valentine’s Day, it’s important to understand that a successful intimate relationship is a constantly evolving process of tuning in, adapting, and forging deeper connections, compassion, and caring for one another. Becoming aware […]
