Community
The Road to Recovery Was Paved By Me and My Wheelchair: Q&A With Ryann Mason
Many people with chronic illnesses, like Ehlers-Danlos syndrome (EDS) or other disabling or deteriorating conditions, are often afraid of the possibility of “ending up in a wheelchair.” It is a real fear. But what if we changed our thinking? Wheelchairs provide freedom; they aren’t the end, but empowering and enabling for the user. And sometimes, […]
Para climber Anoushé Husain on “believing in the impossible”, her cancer diagnosis, EDS journey, and the sports she loves
For our December newsletter, journalist Karina Sturm interviewed Anoushé Husain. Husain is a civil servant and paraclimber who broke the Guinness Book of World Records for climbing the greatest distance on a climbing wall in one hour, as a female climber with only one hand. She was born with half an arm, has beaten cancer, […]
EDSed Episode 1: The Norris Lab
EDSed is our new series of full-length interviews with international EDS experts. These educational interview series with journalistic (news) quality is complementary to our webinar recordings and another free resource we provide for our community. All films are produced by journalist, and We Are Visible filmmaker Karina Sturm and sponsored by Chronic Pain Partners. You […]
Chronic Illness Advocate Brianne Benness about her EDS journey and #NEISVoid
For our November newsletter, journalist Karina Sturm interviewed Brianne Benness, the host of No End In Sight, a podcast about life with chronic illness and a chronically ill person’s journey to diagnosis. She is a co-founder of Stories We Don’t Tell, where she talks about hypermobility, mast cell disorders, and recontextualizing old experiences using new […]
Jules Machias about their EDS journey and new middle-grade book “Fight + Flight”
For our July newsletter, the Chronic Pain Partner media team is excited to introduce the EDS community to the new middle-grade* fiction book “Fight + Flight,” which features a character with EDS! Journalist Karina Sturm had the pleasure to talk to author Jules Machias about their life with Ehlers-Danlos syndrome, their career as a writer, […]
Interview with Donna Sullivan, TCAPP, about wrongful child abuse allegations and medically complex children
For our July newsletter, journalist Karina Sturm spoke with Donna Sullivan, board member of The Coalition Against Pediatric Pain (TCAPP). Sullivan lives with EDS and has several affected children as well. In this interview, she shares with Chronic Pain Partners her decade-long experience working with families accused of child abuse due to a medically […]
Caring for a person with Ehlers-Danlos syndrome: An interview with two caregivers
John Ferman Gilbert Torres Ehlers-Danlos syndrome is a condition that affects every person differently. Even within the same type, symptoms can […]
Run like a Zebra For EDS Race
Chronic Pain Partners 501(c)(3) is a gold Sponsor for this Event. Florence, WI | Saturday, May 21, 2022 at 9:00 AM CST info@runlikeazebra.com | 715-301-0905 Race Information 1k & 5K Run, Walk or Roll Place Date and Time 749 Central Ave Florence, WI 54121 Saturday, May 21, 20229:00 am CST Details The […]
