Marisa Wexler, MS,  senior science writer—

In the first case of its kind, doctors report that a child with kyphoscoliotic Ehlers-Danlos syndrome (kEDS) recovered from a major bleeding emergency without needing surgery. The case suggests a non-surgical approach may be feasible for patients with the rare condition. Doctors managed the boy, 11, conservatively with blood…

People with vascular Ehlers-Danlos syndrome (vEDS) more commonly experience artery problems than people with other disorders that are also marked by weakened blood vessels, a new study reports. The findings could help guide more personalized care and monitoring based on each individual’s condition, researchers said. “Tailored surveillance and management…

An interaction between the proteins M2K6, p38, and ERK may substantially affect the risk of major bleeding problems in vascular Ehlers-Danlos syndrome (vEDS), and targeting them may help preserve blood vessel health, a study in mice suggests. “The findings presented in this work suggest that pharmacologic strategies that can…

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…

Researchers called on doctors to initiate conversations about social media with their hypermobile Ehlers-Danlos syndrome (hEDS) patients to help them find tools they can use and avoid misinformation. People with hEDS frequently use social media to connect with each other and learn about their disease, though social media can…

The Ehlers-Danlos Society will host a five-day conference in July, aiming to help people affected by Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD) learn useful tips for managing the conditions and connect with others in the EDS/HSD community. The event, “EDS and HSD: From Head to Toe,”…

A mutation in the gene THBS2 cause a newly defined form of Ehlers-Danlos syndrome (EDS) that’s characterized by unusual flexibility as well as prolonged bleeding and blood vessel abnormalities, a new study reports. The study, “Heterozygous THBS2 pathogenic variant causes Ehlers–Danlos syndrome with prominent vascular features…

People with hypermobile Ehlers-Danlos syndrome (hEDS) often face uncertainty and feelings of dismissal from healthcare providers, a new review paper highlights. The findings underscore how important it is for clinicians to have open and honest conversations with patients, building relationships to foster collaboration, and make patients feel empowered to…

Through a genetic analysis of more than 170 patients, researchers have identified new genetic mutations that may cause Ehlers-Danlos syndrome (EDS). “Our results are consistent with the complex genetic architecture of EDS and suggest a number of novel … candidate genes and pathways,” the researchers wrote in the study,…

Hypermobile Ehlers-Danlos syndrome (hEDS) may be caused by genetic mutations that impair the body’s ability to process folate, the natural form of vitamin B9. That’s the idea put forward by scientists at Tulane University, in the paper “Folate-dependent hypermobility syndrome: A proposed mechanism and diagnosis,” which…