Accessing consistent and compassionate care as a person with Ehlers-Danlos syndrome (EDS) and related conditions remains one of the biggest challenges in the healthcare system – no matter the country we live in. From delayed diagnoses to a lack of coordinated support, patients often find themselves piecing together care from multiple specialists—while simultaneously managing insurance, […]
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 […]
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 […]
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 […]
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 […]
Sensitivity in the Spotlight and Why Labels Matter More Than Ever In today’s politically charged climate, the act of labeling—whether as a diagnosis, identity, or personality trait—has become a battleground. With the current administration rolling back Diversity, Equity, and Inclusion (DEI) initiatives, discussions around neurodiversity, sensitivity, and individuality are under scrutiny. But what happens when […]
The Ehlers-Danlos Syndromes (EDS) are complex and multifaceted conditions that have, for decades, challenged both patients and medical professionals alike. Over recent years, several books have been published on EDS. For instance, Dianna Jovin’s Disjointed and Christie Cox’s Holding It All Together, among many others. Recently, Symptomatic joined the list. Edited by EDS experts Dr. […]
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 […]
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In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness
EDS Physical Therapy Book & Free Webinar: “Living Life to the Fullest with Ehlers-Danlos Syndrome”