Managing Ehlers-Danlos
Interview with Georgina Frankie: Author of “The Chemistry Test”
After the “Fourth Wing” book series, Chronic Pain Partners became aware of a new romance novel, “The Chemistry Test”, written by Georgina Frankie, which features a character with Ehlers-Danlos syndrome (EDS). In a genre where disabled characters are often either absent or reduced to stereotypes, Frankie brings a refreshing perspective: a love story that embraces […]
AWOL Zebra Podcast: Building Community (and Laughs) Around EDS
When host CHristie was not able to walk and talk in 2021, she lost the career she had built as a radio DJ. What began as a personal way to process those changes—recording short reflections on living with Ehlers-Danlos syndrome—has since grown into AWOL Zebra, a daily podcast that has reached listeners across countries. AWOL […]
Building a Supportive and Caring Medical Team No Matter Where You Live
Guest post by Jon Rodis, President of the Connective Tissue Coalition Finding respectful, knowledgeable care can be difficult, especially for those living with complex or chronic conditions. After years of what I call “the doctor shuffle,” I discovered strategies that helped me strengthen my care and build a supportive medical team. Here are the […]
The Quiet Weight of Chronic Illness Grief
Living with a rare, chronic illness is profoundly isolating—not only physically, but emotionally. Even when surrounded by others, I often feel like a ghost, disconnected from the world around me. I remember sitting at a party, listening to conversations that once felt familiar, and being hit with the stark contrast between their lives and mine. […]
“Primary Care Without the Gaslighting”: How Chronius Health Is Rethinking Care for People with EDS and Complex Conditions
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, […]
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 […]
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 […]
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 […]
