They already understood.They already cared.They already believed. The next day, he was home again.And suddenly our phone rang with kindnessoffers of meals, ears, hands, hearts.Teachers, caregivers, friendsall reaching toward usinstead of away. After fourteen years of walking alone,this flood of support felt surreallike stepping into warm waterafter years of winter cold. But perhaps this is […]
The Hidden Disabilities Sunflower lanyard can help patients with EDS signal to others that they may need extra understanding, support, or time in workplaces, shops, or other public spaces.
Karina Sturm: What inspired you to write “The Chemistry Test”? Georgina Frankie: For me, it was kind of twofold, I knew I wanted to explore the idea that many of us are more alike than different, and to see how far I could take it! But also, around that time, there were so many stories […]
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 […]
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 […]
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. […]
Karina Sturm: Your tagline—“Primary care without the gaslighting”—really stood out to me. It’s a bold promise. What inspired it, and how does it shape your practice? Danielle Lazarowitz: I started Chronius Health as a patient myself. While I don’t have Ehlers-Danlos syndrome, I do have POTS—a common comorbidity—as well as autoimmune diseases like Sjögren’s and […]
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 […]
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”