News

More than half of children with vascular Ehlers-Danlos syndrome (vEDS) are diagnosed through genetic testing after a family member is found to have the disease, a study found. The remaining patients receive their diagnosis following a serious clinical event that requires medical intervention or due to having certain clinical…

Within three months of an Ehlers-Danlos syndrome (EDS) diagnosis, many patients and their parents felt there was a lack of related educational materials, which was a barrier to their knowledge and comfort in managing the condition, according to a new survey study conducted by U.S. researchers. The respondents also…

People with Ehlers-Danlos syndrome (EDS) living in the U.S. face high healthcare costs, with the annual median out-of-pocket expense exceeding $13,000, a study found. The findings “highlight the magnitude of the burden of health care spending on patients with EDS,” with “both direct and indirect costs of accessing and…

Scientists have discovered three subgroups related to different gastrointestinal problems among people with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD), a study reveals. Some people had hEDS or HSD without the symptoms, while others also had irritable bowel syndrome (IBS), a condition associated with abdominal cramps, bloating,…

Adolescents with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD) are more sensitive to pain in different areas of their body, a recent study shows. Exercise was found to help reduce pain sensitivity in both groups for the muscles involved, though not equally in the muscles tested.

Hypoglycemia, or low blood sugar, may be among symptoms of Ehlers-Danlos syndrome (EDS), according to a case report. A woman with hypermobile EDS (hEDS) came to a clinic experiencing significant neurological symptoms related to low blood sugar that occurred most often after eating or physical activity, but was…

A young girl endured a long and arduous process as part of an effort to get diagnosed for three co-occurring rare diseases — Ehlers-Danlos syndrome (EDS), chronic nonbacterial osteomyelitis (CNO), and sacroiliac arthritis — but once they were identified the girl was able to get treatment that controlled her…

A 25-year-old woman was diagnosed with vascular Ehlers-Danlos syndrome (vEDS) after six years of multiple bowel perforations and aneurysms (abnormal bulges in blood vessels walls), according to a case study from Lebanon. These episodes required urgent, invasive surgeries, removal of parts of the intestine, two intensive care unit stays,…

Zevra Therapeutics has been enrolling and dosing new patients in a Phase 3 clinical trial testing celiprolol, a beta blocker being developed for people with vascular Ehlers-Danlos syndrome (vEDS) caused by mutations in the COL3A1 gene. The trial, dubbed DiSCOVER (NCT05432466), is assessing how well celiprolol works…

A first case of dermatofibromas — benign and firm skin nodules, often darker than the patient’s skin color — has been reported in Ehlers-Danlos syndrome (EDS) in a young woman in Iran. “To our knowledge, this combination of findings is a previously unreported occurrence,” the researchers wrote in…