The 35-page collection of hand-drawn illustrations isn’t just a fun distraction. It’s a deeply personal, empathetic offering from someone who gets it—someone who’s lived the pain, fatigue, brain fog, and isolation. Machias pairs each page with quotes that feel like inside jokes or quiet reassurances for the spoonie community. Whether it’s the chronic illness metaphors […]
Lead author Dr. Pradeep Chopra, a pain specialist located in Rhode Island, who has treated EDS patients for decades, shared the motivations behind the study: “I was seeing patients with EDS and almost all of them had gone through bad experiences of being misdiagnosed, misguided, and misjudged by the medical community. In 2010, I decided […]
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 Sensory Sensitivity and Hypermobility: The Unseen Link If you’ve ever been told you’re “too sensitive,” you’re not alone. High sensitivity, particularly in the form of Sensory Processing Sensitivity (SPS) or being what’s now commonly referred to as a Highly Sensitive Person (HSP), is a […]
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 […]
With growing awareness about the Ehlers-Danlos syndromes, varying resources in different types of media developed over the last years. Our Chronic Pain Partners’ Team is collecting their favorite books, podcasts and films on EDS and its comorbid condition in a series of listicles you will find on our website over the next months. We have […]
Ehlers-Danlos Syndrome May Increase Susceptibility to Infections
EDS, POTS and MCAS Linked by One Gene Mutation
Popular People With Ehlers-Danlos Syndrome
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”