The dedicated volunteers both patients, advocates and medical providers come together to produce written guides to support education about complex symptoms and related conditions. Topics include “What is EDS?,” “MCAS Patient Guide,”“Dysautonomia Guide,” “Tethered Cord Guide,” plus a guide to getting disability when you have EDS.
There’s a good chance you’ve heard how important “getting stronger” is for bendy people. And it’s true: bendy people have been shown to generate about 30% less muscular force (i.e. be 30% weaker) at baseline than their non-bendy counterparts. And yet, the bendy body relies even more heavily on muscular support than others, thanks to […]
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 […]
