News

The number of adolescents with Ehlers-Danlos syndrome (EDS) who identify as transgender or gender diverse (TGD) was much higher than would be expected given national averages, a new analysis of data from a U.S. specialty clinic shows. “The cause of the association between TGD and EDS is unclear, but…

Many people with hypermobile Ehlers-Danlos syndrome (hEDS) have tried complementary and alternative medical (CAM) techniques like massage therapy or meditation and some report these help manage pain and other symptoms, according to a new study. “Our study shows that clinicians should be aware that many patients with chronic pain…

A young girl was diagnosed with the classical type of Ehlers–Danlos syndrome (EDS) despite showing signs of kyphoscoliotic EDS (kEDS), a case study reported. Her diagnosis was confirmed only after the discovery of a previously unreported variant in the COL5A2 gene, known to be associated with classical EDS…

Some people with Ehlers-Danlos syndrome (EDS) may experience dysphonia, or a hoarse voice, as a consequence of their disease, but symptoms seem to improve with voice therapy, according to a report of four cases in the U.S. “Voice therapy is a low-risk and potentially beneficial treatment in this patient…

Researchers detailed the upper limb motion, occurrence of dislocations, and bone health of children and adults with musculocontractural Ehlers-Danlos syndrome (mcEDS). Shoulder dislocations were the most frequent dislocations, while two or more upper limb dislocations occurred in the majority of study participants. Children, more than adults, had hyperextended elbow…

Lesions in the abdominal aorta — the lower part of the large blood vessel that carries blood from the heart out to the rest of the body — are common among people with vascular Ehlers-Danlos syndrome (vEDS), a new study highlights. “The main finding of the present study is…

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…