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.
What Two New Studies Say About the Head, Neck, and hEDS People with Ehlers-Danlos syndrome have heard for years that their symptoms are “in their head.” In one sense, that may be true—but not in the way we all hate to hear. When it comes to symptoms like headaches, nausea, dizziness, brain fog, visual disturbances, […]
Scoliosis and Ehlers-Danlos Syndrome (EDS) frequently go hand-in-hand. In this article, we cover the essentials of scoliosis and its prevalence in the EDS community. Next, we spotlight a highly regarded yet lesser-known approach for treating scoliosis called the Schroth Method. To help you decide if it is right for you, we caught up with Schroth-certified […]
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 […]
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 […]
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 […]
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 […]
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. […]