News

People with Ehlers-Danlos syndrome (EDS) face an average eight-year wait for an accurate diagnosis, partly because no single hospital or clinic holds their complete medical history, according to a new analysis by Novellia Research. The study found that about one-third of an EDS patient’s medical history sits in…

In order for doctors to accurately recognize Ehlers-Danlos syndrome (EDS), they need to consider a patient’s clinical history as a whole, a case study shows. A team of scientists in Japan described the case of a woman in her 60s who had a history of both intestinal tears…

Difficulties with daily activities, physical activity, and social participation may be important in understanding the extent of disability in people with hypermobile Ehlers-Danlos syndrome (hEDS), a new study suggests. By examining patterns of symptoms, researchers identified three groups with low, moderate, or high levels of disability. Nearly 60% of…

Young adults with Ehlers-Danlos syndrome (EDS) who underwent surgery in the U.S. for an abnormally formed or unstable hip experienced clinically meaningful improvements in function and less pain, as well as benefits in mental health, a new study found. Further, these patients — mostly in their late 20s —…

Breathing problems have a significant effect on daily activities and quality of life for people with hypermobile Ehlers-Danlos syndrome (hEDS) and generalized hypermobility spectrum disorder (G-HSD), a study showed. People with hEDS or G-HSD who had more severe dyspnea (shortness of breath) were more likely to have poorer physical…

Gynecologists, urologists, and pelvic floor physical therapists often diagnose and treat vulvar pain in women with hypermobile Ehlers-Danlos syndrome (hEDS) without formal training in this type of pain care, relying instead on experience gained directly from their patients, an interview study found. The study described how these providers, who…

Surgery to relieve pressure on nerves or blood vessels near the shoulder may ease symptoms such as pain and tingling and improve daily function in people with hypermobile Ehlers–Danlos syndrome (hEDS) who also have thoracic outlet syndrome (TOS), a small U.S. study suggests. However, for most patients, relief…

Gastrointestinal symptom-related anxiety and fear of negative consequences from eating may contribute to positive eating disorder screens that overestimate risk in adults with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD). That’s according to a study in the U.K. that evaluated patients’ responses to the Sick, Control, One…

Women with hypermobile Ehlers–Danlos syndrome may process androgen hormones — steroid hormones such as testosterone and related male sex hormones — differently, which could be linked to some of their symptoms, according to a study. More research is needed to understand why and whether it affects treatment, researchers wrote…

People with hypermobile Ehlers-Danlos syndrome (hEDS) who also have autism commonly experience complicated journeys to diagnosis of both conditions — but once both conditions are accurately diagnosed, patients often report feeling empowered and better able to manage their own care. “Diagnostic journeys were lengthy, gruelling and expensive, particularly for…