Celebrating My Two-Year Stoma-Versary I used to feel like I couldn’t say, “my ostomy bag saved my life,” because I didn’t get my ostomy bag for the same reasons a lot of people do. Some of the most common reasons people need ostomies are for inflammatory bowel disease (IBD), acute infections like diverticulitis, or colon […]
We wanted to end EDS Awareness Month by spotlighting the lived experiences of four individuals with Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD). Through these perspectives, we aimed to tackle a few of the many myths surrounding these conditions. We also wanted to offer a glimpse into the reality of living with EDS/HSD, including […]
This month, we wanted to give you a peek into the daily lives of our team members by asking them to share a few of their favorite go-to supportive items for Ehlers-Danlos syndromes (EDS) or hypermobility spectrum disorders (HSD). While these aids might be what work for us personally, we hope they offer inspiration and ideas to help you live your life to the fullest with EDS/HSD.
Run Away, Netflix’s latest Harlan Coben adaptation, has many twists and turns. However, for the EDS community, the most meaningful revelation isn’t even a plot. It Is one of the first accurate depictions of an ambulatory wheelchair user. Run Away is a dark thriller/drama about Simon Greene, who is searching for his daughter Paige. With […]
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 […]
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.
After the “Fourth Wing” book series, Chronic Pain Partners became aware of a new romance novel, “The Chemistry Test”, written by Georgina Frankie, which features a character with Ehlers-Danlos syndrome (EDS). In a genre where disabled characters are often either absent or reduced to stereotypes, Frankie brings a refreshing perspective: a love story that embraces […]
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 […]
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”