Margarida Maia, PhD,  science writer—

A man with vascular Ehlers-Danlos syndrome (vEDS) had life-saving emergency surgery to repair a tear in his bowel caused by segmental absence of intestinal musculature (SAIM), a condition where a part of the bowel wall’s muscle is missing. Both vEDS and SAIM can lead to fragile tissues that can…

Some people with Ehlers-Danlos syndrome (EDS) may experience symptoms affecting the larynx (voice box), according to a report of nine patients in the U.S., including six who were singers. “Recent years have seen an increase in reports on the laryngeal manifestations of Ehlers–Danlos Syndrome,” researchers wrote. “Here, we attempt…

A woman with kyphoscoliotic Ehlers-Danlos syndrome (EDS), a rare disease form that causes an abnormally curved spine, went misdiagnosed with Larsen syndrome, which can also cause the spine to curve, for more than 40 years, according to a report. This case in the U.S. highlights the value of genetic testing…

Sometimes, it may be best to not do surgery on an aneurysm — a bulge in a weakened area of a blood vessel — and avoid the risks that come with operating on the fragile tissues of people with vascular Ehlers-Danlos syndrome (vEDS). That’s according to experience gained in…

Wearing compression garments — tight-fitting, elastic clothing items — and doing physiotherapy may help people with hypermobile Ehlers-Danlos syndrome (EDS) improve balance and proprioception, a small study has found. Proprioception refers to a person’s perception of the location and movement of their body. The study, “Effects of compression…

May is awareness month for Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD), and this year there are many ways people around the globe will be showing their support. To help people stay engaged, The Ehlers-Danlos Society has assembled a list of “acts of awareness” — from lighting…

A young man with an unusual combination of Birt-Hogg-Dubé syndrome, a rare disease of the skin and organs, and Ehlers-Danlos syndrome (EDS) was found to carry a new mutation in COL5A1, a gene linked to the classical type of EDS, according to a report. “This mutation could have…

A young girl with short stature due to spondylodysplastic Ehlers-Danlos syndrome (spEDS) was found to carry two copies of a new gene mutation that likely is disease-causing, a report from India says. The previously unreported mutation maps to the SLC39A13 gene, which has been linked to this type of…

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…

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…