News

Most adults with hypermobile Ehlers-Danlos syndrome (hEDS) report notable changes in breathing patterns, called functional respiratory complaints, according to a population survey. The survey included the Nijmegen questionnaire (NQ), which assessed these breathing-related symptoms, including chest pain, dizzy spells, shortness of breath, faster or deeper breathing, and chest…

A pre-implantation genetic diagnosis (PGD), used for identifying genetic abnormalities in embryos during in vitro fertilization (IVF), may help women with vascular Ehlers-Danlos syndrome (vEDS) who want children, a recent case report shows. A woman with vEDS successfully used PGD to have two biological children via surrogacy. Neither were…

Adults with hypermobile Ehlers-Danlos syndrome (hEDS) often receive more than 10 alternative diagnoses before a confirmed hEDS diagnosis, according to a large patient survey. Anxiety, depression, and migraines were the most common diagnoses. On average, it took about 10 years and 15 clinicians to receive an hEDS diagnosis. The…

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…

Two cases of vascular Ehlers-Danlos syndrome (vEDS) were diagnosed during the treatment of severe eye-related problems and later found to be vEDS-associated complications, according to a recent report from Romania. While these complications were considered life-threatening for the young adults, prompt identification of their underlying cause enabled both patients…

Treatment of kidney stones can be safely done in people with Ehlers-Danlos syndrome (EDS) so long as certain modifications are made, a new case report from Japan highlights. A woman in her 30s with EDS, experiencing abdominal pain, was successfully treated after clinicians took into account her physical status —…

Hypermobile Ehlers-Danlos syndrome (hEDS) may be caused by genetic mutations that impair the body’s ability to process folate, the natural form of vitamin B9. That’s the idea put forward by scientists at Tulane University, in the paper “Folate-dependent hypermobility syndrome: A proposed mechanism and diagnosis,” which…

People with vascular Ehlers-Danlos syndrome (vEDS) who are treated with certain blood pressure medications — namely beta blockers (BB) and/or angiotensin II receptor blockers (ARB) — are at lower risk of death and disease progression, a broader analysis of patients in the U.K. suggests. “The observation of improved clinical…

People with severe connective tissue disorders, namely vascular Ehlers-Danlos (vEDS) and Loeys-Dietz syndromes (LDS), have better quality of life than those with the milder hypermobile EDS (hEDS), according to a recent study. Patients with vEDS or LDS experienced significantly less depression, pain, fatigue and sleep problems compared with…

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…