There is exciting news for the recently reported 17% of hEDS patients and 14.7% of HSD patients who experience polycystic ovary syndrome, now renamed to polyendocrine metabolic ovarian syndrome. On May 12th, 2026, a new article was published in The Lancet announcing the name change from polycystic ovary syndrome (PCOS) to polyendocrine metabolic […]
For many people living with hypermobile Ehlers-Danlos syndrome (hEDS), one of the most frustrating aspects of the condition is pain that feels impossible to explain — burning sensations, widespread sensitivity, symptoms that seem to involve the whole body rather than just the joints. Standard neurological tests often come back normal, leaving patients without answers […]
“What if it causes anaphylaxis?” “What if it makes me sick?” “What if it doesn’t work?” “Once I take it I can’t undo it.” For most people, starting a new prescription is routine – pick it up, get generic instructions from the pharmacist, take it, then report back to your doctor in a few […]
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 […]
July is a busy month in the Ehlers-Danlos world. The EDS Society’s Annual Global Learning Conference takes place in Allen, Texas, on July 24-26. It will feature a great lineup of esteemed physician speakers, patient organizations, advocates, and presentations covering this year’s theme: “Exploring Comorbidities in EDS & HSD.” It is also the Ten-Year Celebration of the founding of the Ehlers-Danlos […]
Chronic illness can be isolating in ways that are hard to articulate, even to the people who love you most. It’s not just the physical reality but also the guilt of canceling plans, the exhaustion of explaining yourself, and the fear that your illness is impacting your relationships. I have found great value in people […]
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 […]
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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”