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A two-week virtual mindfulness program led to quality of life improvements for people with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD), according to a recent pilot study. Patients reported benefits of the exercise included increased bodily awareness and reduced pain intensity, but participants noted a need for…

Poorer bone density and mineral content can be common in people with hypermobile Ehlers-Danlos syndrome (hEDS), likely as a result of reduced physical activity, a study indicates. “Based on the results of this study, we suggest that health care workers recommend, like in healthy individuals, regular physical activity and…

As people with vascular Ehlers-Danlos syndrome (vEDS) age, their risk of damage to the aorta, a large artery carrying blood from the heart to the body, rises, a study suggests. The study, “Assessment of arterial damage in vascular Ehlers-Danlos syndrome: A retrospective multicentric cohort,” was published…

Researchers have identified a rare type of disease-causing mutation, called a multi-exon deletion in the COL5A1 gene, in a girl with classical Ehlers-Danlos syndrome (cEDS). The girl inherited the disease from her father, who showed no symptoms but carried the mutation in some of his cells but not…

Using genetic testing, researchers in Japan identified 16 new COL3A1 gene mutations associated with vascular Ehlers-Danlos syndrome (vEDS), according to a recent case series. A range of different types of mutations was identified — each associated with a different level of disease severity and symptoms, or clinical presentation. “This is…

A Tarlov cyst, a fluid-filled sac in the spine that may rarely occur as a complication of Ehlers-Danlos syndrome (EDS), caused long-lasting loss of bladder and bowel control (incontinence) in a boy with hypermobile EDS, a study showed. While several cases of Tarlov cysts in adults with EDS have…

Most families affected by Ehlers-Danlos syndrome (EDS) feel their medical care needs are not being met, according to a survey of patients and caregivers in the midwestern U.S. Survey respondents believe they or their child would benefit from an integrated and multidisciplinary team, with an ideal approach including pain…

Mutations in the FKBP14 gene, a cause of kyphoscoliotic Ehlers-Danlos syndrome (kEDS), lead to the accumulation of collagen protein within connective tissue cells, a case series reported. Typically, collagen is secreted from these cells to add strength, support, and stretchiness to organs and tissues. In kEDS, it instead is…

A higher incidence of Ehlers-Danlos syndrome (EDS) is evident in people with gastroparesis — a condition in which the stomach doesn’t properly empty itself of food — than would be expected among the general public, researchers reported. Genetic analysis revealed that mutations in genes associated with EDS, in particular…

Mortality rates following surgery for certain complications of the aorta — the main artery that carries blood away from the heart — are low among people with Ehlers-Danlos syndrome (EDS), a study has found. But non-elective or emergency hospital admissions were linked to a greater mortality risk, data show.