Learn About Vascular Ehlers-Danlos Syndrome (VEDS)

What is the definition of Vascular Ehlers-Danlos Syndrome (VEDS)?
Vascular Ehlers-Danlos syndrome is a more severe form of Ehlers-Danlos syndrome, which is a genetic disorder that affects the connective tissues, such as the skin, blood vessel walls, and joints. Vascular Ehlers-Danlos syndrome can cause the walls of blood vessels, the intestines, or the uterus to rupture.
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What are the symptoms of Vascular Ehlers-Danlos Syndrome (VEDS)?
Symptoms of vascular Ehlers-Danlos syndrome include a thin nose, thin upper lip, small earlobes, and prominent eyes, with translucent skin that bruises easily, and fragile blood vessels. Other symptoms of vascular Ehlers-Danlos syndrome may include short stature, premature aging of skin, receding gums, glaucoma, hypermobility of small joints, high blood pressure, collapsed lung, joint dislocations, undescended testicles, uterine prolapse or rupture, and cognitive impairment.
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What are the current treatments for Vascular Ehlers-Danlos Syndrome (VEDS)?
There is no cure for vascular Ehlers-Danlos syndrome. Treatment for vascular Ehlers-Danlos syndrome is mostly focused on alleviating symptoms and preventing complications, such as joint dislocations. Treatment for vascular Ehlers-Danlos syndrome includes pain relievers, such as acetaminophen, ibuprofen, and naproxen sodium; medications to lower blood pressure; physical therapy; braces; and surgery to repair joints or ruptured blood vessels and organs. Patients with Ehlers-Danlos syndrome should be regularly screened for aneurysms, which are ballooning of the arteries with possible rupture. Heavy lifting and contact sports should be avoided. Avoid chewing gum, hard foods, and ice. Wear supportive shoes, and sleep with body pillows on a dense foam mattress to provide joint support. Women with vascular Ehlers-Danlos syndrome who are considering pregnancy should meet with a genetic counsellor.
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What are the latest Vascular Ehlers-Danlos Syndrome (VEDS) Clinical Trials?
A Multicenter, Randomized, Double-blind, Placebo-controlled Study of Enzastaurin for the Prevention of Arterial Events in Patients With Vascular Ehlers-Danlos Syndrome (vEDS) Confirmed With COL3A1 Mutations, Followed by an Open Label Extension (OLE)

Summary: The purpose of this study is to investigate the efficacy of enzastaurin compared to placebo in preventing arterial events (rupture, dissection, pseudoaneurysm, carotid-cavernous sinus fistula, or aneurysm, fatal or not) leading to intervention or mortality attributable to an arterial event in patients with vEDS confirmed with pathogenic heterozygous COL3A1 gene mutations predicted to derive a muta...

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A Phase 3 Randomized, Double-Blind, Decentralized Clinical Trial to Compare the Efficacy of Celiprolol to Placebo in the Treatment of Patients With COL3A1-Positive Vascular Ehlers-Danlos Syndrome

Summary: This is a prospective, Phase 3, randomized, double-blind, placebo-controlled efficacy study to evaluate celiprolol in patients genetically confirmed as COL3A1-positive vEDS using a decentralized clinical trial design.

What are the Latest Advances for Vascular Ehlers-Danlos Syndrome (VEDS)?
Intraperitoneal bladder rupture in a young child with vascular Ehlers-Danlos syndrome.
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