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…
News
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…
A young woman with kyphoscoliotic Ehlers-Danlos syndrome (kEDS) showed severe alterations in blood vessels that complicated her clinical care, a case study reports. “kEDS is a rare disease impacting multiple organ systems requiring the involvement of a specialized multidisciplinary team to optimize management,” researchers wrote. The case study, “…
Women with Ehlers-Danlos syndrome (EDS) are at a higher risk for complications during pregnancy than other women, including poorer fetal growth, preterm delivery, and postpartum bleeding, a study using a large U.S. database reports. Likewise, these patients were more likely to deliver via cesarean section. But a number of…
Psychological trauma due to hostility or disinterest from a clinician is common among people with hypermobile Ehlers-Danlos syndrome (EDS), an interview-based study reported. Such unpleasant encounters can lead patients to lose trust in healthcare providers, the healthcare system in general, and to develop anxiety regarding further care. Researchers described…
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