Steve Bryson, PhD,  science writer—

Within three months of an Ehlers-Danlos syndrome (EDS) diagnosis, many patients and their parents felt there was a lack of related educational materials, which was a barrier to their knowledge and comfort in managing the condition, according to a new survey study conducted by U.S. researchers. The respondents also…

Scientists have discovered three subgroups related to different gastrointestinal problems among people with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD), a study reveals. Some people had hEDS or HSD without the symptoms, while others also had irritable bowel syndrome (IBS), a condition associated with abdominal cramps, bloating,…

In a new study, parents highlight the challenges of raising children with hypermobile Ehlers-Danlos syndrome (hEDS), including emotional distress, difficulties interacting with healthcare professionals, and struggles accessing medical and psychological support. Researchers stress the need for family-focused interventions to improve the physical and psychological health of hEDS children and…

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…

Telitacicept, an anti-inflammatory medication, successfully treated a woman with arthrochalasia Ehlers-Danlos syndrome (aEDS), a case study reports. Researchers speculated the disease-causing mutation that led to defective collagen protein may have triggered an immune response that worsened her symptoms, which were then reduced upon telitacicept treatment. The case study, “…

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…

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…

Two new mutations in the COL3A1 gene, the underlying chief cause of vascular Ehlers-Danlos syndrome (vEDS), were discovered after being missed by standard genetic testing, a study reported. “Our study highlights the necessity of a comprehensive approach to the genetic diagnosis of vEDS,” wrote the researchers in “…

Nonemergency open surgery can safely and successfully repair abdominal aortic aneurysms (AAAs) in people with vascular Ehlers-Danlos syndrome (vEDS), according to a study of three cases. AAAs are bulges in the aorta, the large artery that runs from the heart to the abdomen. Because vEDS is associated with weakened…