Managing Ehlers-Danlos
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 […]
Why Is It So Hard To Get A Genetics Appointment For My Child?
If you are a parent who is trying to get your child evaluated for Ehlers-Danlos Syndrome, you may have already discovered that it is often not a straightforward process. The Ehlers Danlos Society estimates it can take 10-12 years on average for a diagnosis. That can be a lifetime for a child. However, obtaining a […]
Understanding Your Flare Fettered Friend
Has a friend recently told you: I feel a pain flare coming on, I’m in a flare, or I’m coming out of a flare? If so, what does this mean for them and what does it mean for you? Maybe you want to help but are unsure how? In this article, guest author Avi, who […]
The Extra Mile: Why This 79-Year-Old Pioneering Physician Is Running the Boston Marathon
Not all heroes wear capes, sometimes they wear sneakers. At age 79, Dr. Michael Holick is preparing to run the Boston Marathon to raise awareness for a group of patients he’s long championed: those living with Ehlers-Danlos Syndrome (EDS). It will be the second time he has completed this historic and rigorous road race. Although […]
