Articles
Out of Spoons: A Spoonie-Centered Coloring Book from Author and Artist Jules Machias
Life with chronic illness rarely comes with downtime—or at least, not the kind we choose. For those living with Ehlers-Danlos syndrome (EDS), ME/CFS, lupus, fibromyalgia, autoimmune diseases, or any other related condition that affects your spoons, rest is often a necessity. Author and artist Jules Machias, who lives with EDS, knows this firsthand. Their new […]
Welcome to Lipedema Awareness Month
June is Lipedema Awareness Month. The disease is still widely unknown to people and clinicians. So we are sharing its presentation, how to diagnose and treat it, and, most importantly, how it is connected to Ehlers-Danlos Syndrome (EDS). About Lipedema Lipedema is a complex and poorly understood abnormal fat disease that tends to affect mainly […]
“It’s All in Your Head”: New Study Confirms What hEDS Patients Have Been Told for Decades
A landmark study has revealed what most people with hypermobile EDS (hEDS) already knew since disease onset: a staggering rate of psychiatric misdiagnosis among patients with hypermobile Ehlers-Danlos syndrome (hEDS). The study found that 94.4% of patients were initially misdiagnosed with psychiatric conditions—often by physicians without psychiatric expertise—before receiving an accurate diagnosis of hEDS. Many […]
Hyp+Care: A New Clinic for Chronic Conditions including EDS In New York & Beyond
Finding medical support – whether that is from a doctor, a physical therapist or other experts – when living with Ehlers-Danlos syndrome and comorbid conditions is incredibly challenging. Often, patients have to manage their care alone, coordinating appointments and communications between 10 – 15 specialties while paying six figure medical bills and trying to cope […]
22 Ways to Celebrate EDS and HSD Awareness Month
20 free reasons plus two more at no extra charge! May is designated as Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month. Throughout the month, there are fun ways to show your stripes and help raise awareness of these often-overlooked conditions. Check out some of the ways below that you can help strengthen […]
Current Administration Threatens Medicaid – April 2025
Since the new administration took office in January, policy changes have been moving fast. Currently, the Republican led Congress (the House) is dangling the threat of major budget cuts to social safety nets over the senior and disabled community, leaving a lot of EDSers and others quite stressed about the continuity of their health care […]
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 CCI Research: Understanding the Frequency of Neurosurgical Interventions in Connective Tissue Disorders
A recent study conducted by Ruhoy et al. investigates the frequency of comorbidities and the need for neurosurgical interventions in individuals with connective tissue disorders (CTDs), offering valuable insights into the multifaceted challenges faced by this patient population. What’s the study about? CTDs are a diverse group of disorders that impact connective tissue, leading to […]
