Latest Updates
We’re Not Confused – The System Is: Community Survey Shouts for EDS/HSD Classification Change
May 2025By Maggie Buckley, BCPA and Christie CoxEDS Patient Advocates and Community Researchers Editor’s Note This article was originally developed as a proposed abstract for submission to The Ehlers-Danlos Society’s scientific symposium. Our goal was to share real data from patients on how the current classification system for EDS and HSD affects diagnosis, care, and […]
New Research Study Finds Everything is Connected, As Many Patients Suspected
A wake-up call to the medical community sent directly with data from commercial health insurers A new study focused on the prevalence of multisystem diagnoses among hypermobile Ehlers-Danlos Syndrome (hEDS) patients sheds light on a critical aspect of this complex condition: the widespread systemic impact it has on the body and the connection to other […]
Research News: Could a Blood Test for hEDS & HSD Be Possible?
The EDS Society announced a promising breakthrough in research they funded published September 3, 2024 by a group of Italian scientists in the American Journal of Genetics using their HEDGE registry for the US cohort. Scientists have identified a specific protein in the blood that appears to be present at higher levels in individuals […]
Research Round-Up, Edition One
Welcome, pardner, to our new feature, Research Round-up! In each issue, we’ll bring you summaries of some of the latest EDS research to hit the medical journals. We’ll usually have five or so articles, but we’ve got a special edition this time—10 articles for your information and enjoyment! Yee-haw! Hitch up your horse, grab a […]
Norris Lab Finds HEDS Gene: Kallikrein
Chronic Pain Partners is excited to share a significant breakthrough from the Norris Lab regarding hypermobile Ehlers-Danlos Syndrome (hEDS). After a long wait, the research, spearheaded by Dr. Cortney Gensemer, identifying a genetic variant associated with hEDS has been published, pinpointing mutations in the Kallikrein gene family. The Kallikrein gene family, known for encoding enzymes […]
Decoding Medical Deductions: A Chronic Illness Patient’s Guide to Navigating Healthcare-Related Expenses and Taxes
“Decoding Medical Deductions” is an invaluable resource for individuals managing chronic illnesses and navigating the complex landscape of medical expenses and taxes in the United States. This comprehensive guide provides ten top strategies and resources to effectively manage medical expenses, optimize costs, and prepare for tax filing. The ebook covers various topics, including deduction eligibility, […]
Explaining Disability-Part of What Makes Us Disabled
Author: Jonathan RodisPresident-Massachusetts Chapter of the National Marfan FoundationHead-EDS Massachusetts and New England Support Group “I wanted to share with you something I wrote to help everyone understand what it is like to be disabled, what it is like to have an invisible disability, what to do if you find yourself trying to explain your […]
EDS Support Group Directory in Development at www.EDSawareness.com
www.EDSawareness.com launched its new online resource at the EDNF Learning Conference last week in Cincinnati, Ohio. “We had an overwhelming response”, says John Ferman, Founder. “My wife passed away in 2008 – never knowing EDS was the cause of 30 years of chronic pain. This was the same year my daughter was diagnosed with […]
