Articles
From Patient to Researcher: An Interview with Jeevan Mann
Jeevan Mann is a patient researcher, patient leader and runs an organization called Medical Inspiration, which subsidizes care for patients with EDS as well as educates medical providers on the condition. CPP‘s Karina Sturm spoke with Mann about his rare EDS type, how he became a patient researcher and the important work his organization is […]
The Silence After Survival
This week arrived like a storm we already knew by heart,yet somehow… it carried a different kind of wind. For years, they told us our pain was imagined,that our wounds were illusions,that our illnesses lived only in our minds.Those words carved scars we still carryscars that whisper warningseven when no danger is present. Three years […]
Episode 3: Neurodivergence
In this episode, Cassandra and Marcia speak with Jan Groh, fellow EDSer, advocate, creator of the Oh Twist blog and co-author of the EDS Toolkit. Listen to Episode 3: Transcript: Marcia You’re listening to the EDS Unplugged podcast, brought to you by Chronic Pain Partners, a nonprofit supporting the Ehlers-Danlos Syndrome community. Welcome back […]
A Cheerful Gift Guide for People with EDS, Chronic Pain, Chronic Illness, Disability, and Those Who Love Them: Chronic Pain Partners’ 2025 Gift Guide
Shopping for someone with chronic illness or chronic pain can feel weirdly high stakes.Should you get something comforting?Something fun?Something practical?Something that has nothing to do with their medical life at all? The answer: Yes to all of that. This guide mixes comfort items, purely-for-fun treats, and practical helpers that can make life a little easier. […]
Book Review: The Chemistry Test
It is a truth universally acknowledged that people in possession of rare illnesses rarely see themselves represented in media. Hopefully Jane Austen will allow the borrowing of Pride and Prejudice’s opening to introduce a new novel that breaks that rule. The Chemistry Test is Georgina Frankie’s debut coming-of-age romance novel. The book follows Penelope “Penny” […]
Episode 2: Medically Complex Children
Listen to the full episode here: Cassandra You’re listening to the EDS Unplugged podcast brought to you by Chronic Pain Partners, a non-profit supporting the Ehlers-Danlos Syndrome community. Marcia Welcome back to EDS Unplugged. I’m Marcia Brock. Cassandra And I’m Cassandra A Campbell. Marcia Today we are excited to be joined by […]
New App Can Help Screen for EDS
The Hypermobility Assessment Tool (HAT) app empowers patients who suspect they have EDS by putting the first steps of the screening process directly into their hands.
The Hidden Disabilities Sunflower Lanyard: Making the Invisible Visible
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.
