News

A protein called tenascin X (TNX) plays a key role in gut motility and sensitivity to pain, according to a study in mice and in patients with hypermobile Ehlers-Danlos syndrome (hEDS). The findings also link a TNX deficiency to increased abdominal pain, constipation, and diarrhea in hEDS patients.

A global resource to guide healthcare professionals in assessing and managing symptoms of Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorders (HSD), and related conditions will be developed by the EDS Comorbidity Coalition. A generous donor made the endeavor possible, according to the Ehlers-Danlos Society, which founded the EDS Comorbidity Coalition,…

Patients with Ehlers-Danlos syndrome (EDS) with abnormally rapid breathing and pain may be experiencing a diaphragmatic rupture, a situation that requires prompt surgical intervention, according to a new case report. The study, “Spontaneous Diaphragmatic Rupture in Hypermobile Type Ehlers-Danlos Syndrome,” published in the journal Case Reports in Surgery,…

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…