News

Invasive cardiac procedures in patients with Ehlers-Danlos syndrome (EDS) should be performed with extreme caution and only after a thorough risk/benefit analysis, according to a new case study. The report, “Arrhythmias and myocardial fragility in Ehlers-Danlos syndrome: Complications after routine ICD placement,” was published in the journal HeartRhythm…

A case of vascular Ehlers-Danlos syndrome (vEDS) which appeared as a rapidly growing neck mass was reported by researchers at the University of California San Francisco (UCSF) Medical Center. The case was described in the study, “Vascular Ehlers-Danlos Syndrome Presenting as a Pulsatile Neck Mass: a…

A type of abnormal communication between the main blood vessels in the head, called carotid-cavernous fistula, may be the first manifestation of vascular Ehlers-Danlos syndrome (vEDS) among seemingly healthy young individuals, researchers reported in a recent study. The study, “Pathophysiology of carotid-cavernous fistulas in vascular Ehlers-Danlos…

The current diagnostic criteria for Ehlers-Danlos syndrome (EDS) might not effectively identify certain patients with borderline symptoms of the disease, making genetic testing crucial in these cases, a study reports. In 2017, EDS experts published the criteria used to diagnose the disease, known as the 2017 EDS nosology. But there…

Patients with spondylodysplastic Ehlers-Danlos syndrome with a specific mutation in the B4GALT7 gene may show hearing loss and lower limb swelling over other more common symptoms of the disease, such as specific radiographic abnormalities or intellectual disabilities, a case report shows. The report, “Expanding the clinical…

Gastrointestinal (GI) symptoms in patients with hypermobile Ehlers-Danlos syndrome (hEDS) can develop due to a mobile cecum, an abnormality that leads to longstanding abdominal symptoms, according to a new case study. The report, titled “Mobile Cecum in a Young Woman with Ehlers-Danlos Syndrome Hypermobility type: A Case Report and…

A patient with vascular Ehlers-Danlos syndrome (vEDS), recurrent pneumothorax, and other atypical pulmonary complications was described in a case report from South Korea. The case study, “Vascular Ehlers-Danlos syndrome with cryptorchidism, recurrent pneumothorax, and pulmonary capillary hemangiomatosis-like foci, A case report,” was published in the…

The Ehlers-Danlos Society is launching an awareness campaign about hypermobility in athletics — especially in the dance, gymnastics, and acrobatic communities — to help families understand the challenges of having a super-flexible body. The global initiative started in May, which is recognized as Ehlers-Danlos Awareness Month. For highly flexible athletes in demanding…

Patients with vascular Ehlers-Danlos syndrome (EDS) can, in rare cases, develop cardiomyopathy — a condition affecting the heart muscle — possibly due to mutations in the  COL3A1 gene, according to a new case report. The report, “A case of vascular Ehlers-Danlos Syndrome with a cardiomyopathy and multi-system…

Acer Therapeutics is planning to request approval for its investigative therapy Edsivo (celiprolol) to treat patients with vascular Ehlers-Danlos syndrome (vEDS) in the United States. The company expects to submit a new drug application (NDA) to the U.S. Food and Drug Administration by the end of the first…