News

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…

Most children and young adults with hypermobile Ehlers-Danlos syndrome (hEDS) have cardiovascular issues and dysfunction of their autonomic nervous system, or the network of nerves that control unconscious processes, which in turn negatively affects their quality of life, according to a recent study. Notable issues with the autonomic nervous…

After experiencing a ruptured aneurysm in the hepatic artery — a blood vessel that supplies the liver — years after surgery for a perforated bowel, a 25-year-old man in Japan was diagnosed with vascular Ehlers-Danlos syndrome (vEDS). According to the report detailing his case, the man had been given…

While historically avoided by people with Ehlers-Danlos syndrome (EDS), joint surgery is generally associated with high rates of patient satisfaction and its chance of success is greater when there is an established EDS diagnosis, a study in France has found. Rate of reoperations among the 69 people with non-vascular…

Lower heart function and larger heart size in vascular Ehlers-Danlos syndrome (vEDS) patients were linked to a higher risk of dissections (ruptures) or aneurysms (bulges) in arteries, according to a study. “Our study sheds light on the subtle [heart muscle] abnormalities in vEDS,” the researchers wrote. “A multidisciplinary approach…

A procedure called arthroscopic stabilization is the most common surgical treatment for shoulder joint instability in people Ehlers-Danlos syndrome (EDS) and joint hypermobile syndrome (JHS). Open surgeries are less commonly performed. Both EDS and JHS affect the connective tissue and are marked by hypermobile joints, meaning they move…