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: https://traffic.libsyn.com/440c2355-6390-46d3-a3b5-0ecaf22ea9e9/Jan_Podcast_FINAL_1.mp3 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 […]
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. […]
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” […]
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 […]
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 can help patients with EDS signal to others that they may need extra understanding, support, or time in workplaces, shops, or other public spaces.
Previous editions of Research Round-up can be found at the following links: Edition 5 (Pediatrics) Edition 4 (Neurodivergence) Edition 3 Edition 2 Edition 1 Howdy, partners! This Research Round-up has roped in a whole herd of topics for you. We hope you enjoy the read, learn a thing or two, and feel […]
With heavy hearts we are sharing that our founder and team champion John Ferman has peacefully passed away Tuesday night, November 11, 2025, surrounded by his daughters, Deanna and Deborah. John founded Chronic Pain Partners/EDS Awareness in 2011 in an effort to raise awareness and understanding about EDS and related conditions after his wife Carol […]
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”