News

Psychological interventions to address pain and quality of life for people with Ehlers-Danlos syndrome (EDS) and related conditions are most effective when delivered alongside physiotherapy in an outpatient or community setting, according to a review study. “The results confirmed the primary aim, in that psychological interventions are successful at…

As part of its commitment to support rare disease research, the Mike and Sofia Segal Foundation has pledged $6.7 million to The Ehlers-Danlos Society to advance scientific research in Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD). The “transformative” commitment includes a number of gifts to further and…

Clear clinical guidelines and workshops about how to treat and manage children with Ehlers-Danlos syndrome (EDS) to speed diagnosis and improve care are needed, say physicians who took part in an online survey in the U.S. The study, “Barriers to the Diagnosis, Care, and Management of…

Following surgery to fuse the vertebrae in the lower spine, people with Ehlers-Danlos syndrome (EDS) have a six times higher risk of degeneration of the unfused bones next to the fusion site, a study suggests. However, this complication, called adjacent segment disease (ASD), was not associated with the success…

Abnormally high sensitivity of a type of sensory nerve fibers is behind the heightened pain responses to harmless light touch that were observed in a mouse model of classical-like Ehlers-Danlos syndrome (clEDS), a study shows. This abnormal pain sensation, called mechanical allodynia, is a main symptom of neuropathic pain…

The idea that plastic surgery is risky for people with hypermobile Ehlers-Danlos syndrome (hEDS) is being challenged in a report of four women with the disorder who underwent successful breast lifting or reduction without added complications. “A diagnosis of hEDS is not a contraindication to surgery and acceptable…

Women with hypermobile Ehlers-Danlos syndrome (hEDS) experience rear foot pain — pain in the back of the heel — more frequently than do those with rheumatoid arthritis (RA) or systemic lupus erythematosus (SLE), two other rheumatic diseases, a new study reported. In addition, ankle pain was found to…

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,…

Having elongated and twisted arteries — called tortuous arteries — in the neck is tied to greater cardiovascular risk in people with vascular Ehlers-Danlos syndrome (vEDS), a new study reports. Moreover, the rate of cardiovascular events was higher among vEDS patients younger than 40 with high-risk mutations in the…