This article explores the history and current research surrounding visceroptosis, a condition involving the downward displacement of internal organs. While some forms of organ prolapse, such as rectal and pelvic organ prolapse, are already recognized features of Hypermobile Ehlers-Danlos syndrome (hEDS), the possibility that connective tissue laxity may also affect organs higher in the abdomen […]
This month, we spoke with Amy Wang-Hiller, a violinist living with quadriplegia, hypermobile Ehlers-Danlos syndrome (hEDS), and related complex neuro-connective tissue conditions. As a violin instructor, Amy works with intermediate and advanced musicians navigating changes that affect performance, such as complex neurological disorders. She is also a disability advocate, founder of the InclusiVibe Foundation, and […]
This article explores whether upright MRI may be a useful tool for evaluating EDS-related spinal instability. Understanding the limitations of standard MRI and what positional imaging could offer instead, may help patients, clinicians, researchers, advocates, and healthcare providers better navigate the complex neurosurgical landscape of EDS. Why Supine MRI May Miss the Problem Cervical […]
If you are among the many people with Ehlers-Danlos syndrome (EDS) who also have dysautonomia, summer can feel less like a season to enjoy and more like something to survive. Research suggests that dysautonomia affects approximately 80% of people with hypermobile EDS, making it one of the most common comorbidities associated with the condition. For […]
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 […]
Like many people, my hypermobile Ehlers-Danlos Syndrome (hEDS) was diagnosed after a steep and sudden decline in my health. I had been navigating fatigue, pain, and fogginess for years, but in April 2020, I became bedbound for months following an incident during a Zoom call where I began blacking out and twitching. I had been […]
Going off to college is an exciting time, filled with new adventures and much more freedom, both personally and academically. However, it can also come with numerous challenges, particularly for students with Ehlers-Danlos Syndrome (EDS) and related conditions. On the positive side, increased independence means students with EDS may be able to manage some […]
Many timesI have been called resilient. A title inflicted on melike a brilliant,gleaming badge of honor. But it was one that I never asked for.Worn without choiceor the ability to claima different perspective,a different name. I give myself a new description,a title that encompassesthe pain and infliction. I am persistent. Resilience is to bendand not […]
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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”