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Children with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) who are in pain or anticipating pain show certain walking patterns, leading researchers to believe walking assessments may help to better understand clinical characteristics of the conditions and to develop coping strategies. Compared with typically developing children, those…

A condition called cerebral venous outflow disorder, where blood flow out of the brain is impaired, may have a unique clinical presentation when it occurs in people with connective tissue disorders such as Ehlers-Danlos syndrome (EDS), according to recent research. People with connective tissue diseases who were seen at…

A 33-year-old woman with hypermobile Ehlers-Danlos syndrome (hEDS) experienced less systemic (body-wide) pain and inflammation, as well as greater overall functioning after starting treatment with omalizumab, a medication for asthma and allergies, according to a recent report. Omalizumab is an injectable therapy that blocks the interaction of immunoglobulin…

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, “…

Components of the extracellular matrix (ECM), the network of molecules that gives tissues their structure, are dysregulated in skin cells from people with vascular Ehlers-Danlos syndrome (vEDS), making it a possible target for therapeutic intervention, a recent study suggests. The ECM took on properties…

Clinicians should test for hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorders (HSD) if their patients continue to show persistent symptoms after infection with SARS-CoV-2, the virus that causes COVID-19, according to a small report. “We conclude that hEDS/HSD should be considered … especially in patients of female gender…

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…