News

An anonymous $1 million donation gifted to The Ehlers-Danlos Society will be used to establish an international research network committed to understanding the genetic mechanisms behind hypermobile Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders. The donation, which represents the single largest in the organization’s 33-year history, will help fund the…

Pain in patients with Ehlers-Danlos syndrome (EDS) due to arthritis in the joint that attaches the thumb to the hand can be successfully managed with surgery, according to researchers from the Mayo Clinic. Their study, “Thumb carpometacarpal arthritis in patients with Ehlers-Danlos Syndrome: non-operative and operative experiences,” was…

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…