News

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…

A fragment of fibronectin, a protein that assists in wound healing, appears to be found only in the blood of adults with hypermobile Ehlers–Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD), a study found, suggesting it as a biomarker for diagnosis. Because the fragment could not be detected in…

A combination of surgery, radiotherapy, and hormone therapy successfully treated early-stage breast cancer in a 46-year-old woman with vascular Ehlers-Danlos syndrome (vEDS) in Japan. People with vEDS have fragile blood vessels prone to bleeding and delayed wound healing. Due to these risks, the woman underwent surgery for partial (instead…

Children and adolescents with hypermobile Ehlers-Danlos syndrome (hEDS) may not have a higher risk of developing aortic dilation, a condition wherein a portion of the artery that carries blood from the heart to the body is enlarged. That’s according to a study in the U.S. that compared the rates…