News

The Ehlers-Danlos Society is launching an awareness campaign about hypermobility in athletics — especially in the dance, gymnastics, and acrobatic communities — to help families understand the challenges of having a super-flexible body. The global initiative started in May, which is recognized as Ehlers-Danlos Awareness Month. For highly flexible athletes in demanding…

Patients with vascular Ehlers-Danlos syndrome (EDS) can, in rare cases, develop cardiomyopathy — a condition affecting the heart muscle — possibly due to mutations in the  COL3A1 gene, according to a new case report. The report, “A case of vascular Ehlers-Danlos Syndrome with a cardiomyopathy and multi-system…

Acer Therapeutics is planning to request approval for its investigative therapy Edsivo (celiprolol) to treat patients with vascular Ehlers-Danlos syndrome (vEDS) in the United States. The company expects to submit a new drug application (NDA) to the U.S. Food and Drug Administration by the end of the first…

Patients with Ehlers-Danlos syndrome (EDS) showed a low recurrence rate after hernia surgery, possibly due to the large mesh size used in the procedure, according to researchers. Their study, “Complications and recurrence rates of patients with Ehlers-Danlos syndrome undergoing ventral hernioplasty: a case series,” was published…

Ehlers-Danlos syndrome is strongly associated with several oral and mandibular (jaw) conditions, including craniofacial pain and temporomandibular joint (TMJ) syndrome, according to a recent review. The inclusion of these symptoms may help in the diagnosis and treatment of this clinically and genetically heterogeneous disease. The review article, “The…

Ehlers-Danlos syndrome is strongly associated with orthostatic intolerance syndromes, particularly postural tachycardia syndrome, researchers found in a recent analysis. The study, “Postural tachycardia syndrome and other forms of orthostatic intolerance in Ehlers-Danlos syndrome,” was published in the journal Autonomic Neuroscience: Basic and Clinical. EDS is…

Variants in the AEBP1 gene were identified as the cause of a form of Ehlers-Danlos syndrome in four people from three unrelated families, researchers report. The study, “Bi-allelic Alterations in AEBP1 Lead to Defective Collagen Assembly and Connective Tissue Structure Resulting in a Variant of Ehlers-Danlos Syndrome,” was published in the The…

A new study reveals a lack of awareness among health professionals and pregnant women with Ehlers-Danlos syndrome (EDS) about the condition and the risks associated with it, especially during pregnancy and birth. This lack of awareness could delay access to appropriate care, with detrimental effects for moms-to-be and their babies, according…

Proper psychologial care for people with a history of vascular Ehlers-Danlos syndrome (EDS) who experience stress from a traumatic event is crucial for the prevention of complications. The findings are from a Japanese case report of an EDS patient who suffered artery dissection shortly after her mother died. The report,…

Mutations in the gene COL3A1, responsible for the development of vascular Ehlers-Danlos syndrome (vEDS), are associated with alterations in several structural proteins, according to researchers. The study, “Transcriptome analysis of skin fibroblasts with dominant negative COL3A1 mutations provides molecular insights into the etiopathology of vascular Ehlers-Danlos syndrome,” was…