Being male and having certain facial features, high blood pressure, and some disease-causing mutations all are risk factors for the occurrence of major blood-vessel-related events and/or an early age at the time of their onset among people with vascular Ehlers-Danlos syndrome (vEDS), a…
News
An altered breathing pattern in hypermobile Ehlers–Danlos syndrome (hEDS) may be linked to difficulty sensing how much air fills the lungs with each breath and in controlling ventilation, especially when engaging in a cognitive task, a study suggests. The study, “Impairment of lung volume perception and breathing control…
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,”…
Two brothers with kyphoscoliotic Ehlers-Danlos syndrome (kEDS) had a spontaneous abdominal aneurysm, a ballooning of blood vessel walls, which was successfully corrected with surgery, according to a case report. kEDS is one of 13 types of EDS, a group of genetic disorders that affect the connective tissues, which…
A survey of adults with hypermobile Ehlers-Danlos syndrome (hEDS) found that receiving a diagnosis led to a sense of relief, helped patients manage their symptoms and prepare for the future, and had a positive impact on their quality of care, support network, and overall well-being. Still, more than half…
This May, people around the globe will participate in a number of ways to raise awareness about Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD). The annual awareness month campaign targets not only the general public, but also policymakers, public authorities, industry representatives, health professionals, and scientists. In the…
Most people with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD) carry genetic variations that affect the amount of folate available in their blood, according to a study. These findings support earlier work suggesting changes in how the body processes folate, also known as vitamin B9, may…
A man with vascular Ehlers-Danlos syndrome (vEDS) had a ruptured splenic artery, a blood vessel that supplies the spleen, days after surgery for a perforated bowel, leading researchers in Japan to call for careful monitoring after surgery. “Surgeons should cooperate with physicians and interventional radiologists to perform surgery in…
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…
Most people with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD) have signs of functional neurological disorder, where there’s a problem with the functioning of the nervous system rather than a structural issue, a study has found. Recognizing those signs could help guide appropriate care for hEDS/HSD patients…
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