News

With the U.S. midterm elections now less than two weeks away, patient advocacy groups are solidly focused on a range of hot-button issues, from the Orphan Drug Tax Creditand affordable health insurance to future funding for rare disease research. Yet “whether Democrats take over the House or Senate, or…

Clinicians highlighted the importance of regular screening for arterial diseases in patients with Ehlers-Danlos syndrome (EDS) in connection with Aortic Dissection Awareness Day last month. Arterial diseases — which affect blood vessels carrying blood from the heart to other organs — are known to occur in some of the rarest…

October has been designated as the month to increase awareness on dysautonomia, a complex group of diseases caused by abnormalities in the autonomic nervous system that can also affect patients with Ehlers-Danlos syndrome. Throughout the month, Dysautonomia International is promoting several events to raise awareness and enhance patient advocacy…

Early recognition of patients affected by Ehlers-Danlos syndrome (EDS) is important to prevent painful complications of the disease that can limit daily life activities, researchers suggest in a case report. The report, “Ehlers–Danlos Syndrome: Not Just Joint Hypermobility,” highlights the importance of early diagnosis for a…

Dancers have a high prevalence of generalized joint hypermobility — a condition in which joints can actively or passively move beyond the expected range, an Australian study shows. The study, “The prevalence of generalized and syndromic hypermobility in elite Australian dancers,” was published in the journal Physical Therapy…

Fast genetic screening for vascular Ehlers-Danlos syndrome (vEDS) may be crucial in urgent situations to appropriately manage patients with severe bleeding complications, according to a recent case report. The case was described in the study, “Peripartum Iliac Arterial Aneurysm and Rupture in a Patient with Vascular Ehlers-Danlos Syndrome…

Patients with hypermobile Ehlers-Danlos syndrome (hEDS) have an increased prevalence and severity of gastrointestinal (GI) symptoms, and use more potentially damaging medications than healthy people without the disorder, according to a new study. The data also showed that hEDS patients have a worse quality of life than patients with …

A protein called tenascin X (TNX) plays a key role in gut motility and sensitivity to pain, according to a study in mice and in patients with hypermobile Ehlers-Danlos syndrome (hEDS). The findings also link a TNX deficiency to increased abdominal pain, constipation, and diarrhea in hEDS patients.

A global resource to guide healthcare professionals in assessing and managing symptoms of Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorders (HSD), and related conditions will be developed by the EDS Comorbidity Coalition. A generous donor made the endeavor possible, according to the Ehlers-Danlos Society, which founded the EDS Comorbidity Coalition,…

Patients with Ehlers-Danlos syndrome (EDS) with abnormally rapid breathing and pain may be experiencing a diaphragmatic rupture, a situation that requires prompt surgical intervention, according to a new case report. The study, “Spontaneous Diaphragmatic Rupture in Hypermobile Type Ehlers-Danlos Syndrome,” published in the journal Case Reports in Surgery,…