Vascular Ehlers-Danlos Syndrome (VEDS) Overview

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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.
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.
Who are the top Vascular Ehlers-Danlos Syndrome (VEDS) Local Doctors?
Dr. Raymond H. Lewis
Family Medicine
Dr. Raymond H. Lewis
Family Medicine

Lgh Medical Group, Inc.

600 Clark Rd, 
Tewksbury, MA 
 (9.5 mi)
978-851-4141
Experience:
26+ years
Languages Spoken:
English
Accepting New Patients
Offers Telehealth

Raymond Lewis is a Family Medicine provider in Tewksbury, Massachusetts. Dr. Lewis has been practicing medicine for over 26 years and is rated as an Advanced provider by MediFind in the treatment of Vascular Ehlers-Danlos Syndrome (VEDS). His top areas of expertise are Brittle Cornea Syndrome, Vascular Ehlers-Danlos Syndrome (VEDS), Musculocontractural Ehlers-Danlos Syndrome (mcEDS), and Hyperlipidemia Type 3. Dr. Lewis is currently accepting new patients.

Dr. Noor A. Roomi
Internal Medicine
Dr. Noor A. Roomi
Internal Medicine

Emerson Practice Associates, Inc

131 Old Rd To Nine Acre Cor, 
Concord, MA 
 (9.9 mi)
978-287-3835
Languages Spoken:
English
See accepted insurances
Accepting New Patients
Offers Telehealth

Noor Roomi is an Internal Medicine provider in Concord, Massachusetts. Dr. Roomi and is rated as an Advanced provider by MediFind in the treatment of Vascular Ehlers-Danlos Syndrome (VEDS). Her top areas of expertise are Musculocontractural Ehlers-Danlos Syndrome (mcEDS), Vascular Ehlers-Danlos Syndrome (VEDS), Brittle Cornea Syndrome, and Ehlers-Danlos Syndrome (EDS). Dr. Roomi is currently accepting new patients.

 
 
 
 
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Dr. Roberto Pineda
Ophthalmology
Dr. Roberto Pineda
Ophthalmology

Massachusetts Eye And Ear Associates, Inc

243 Charles St, 
Boston, MA 
 (11.7 mi)
617-523-7900
Languages Spoken:
English
See accepted insurances
Accepting New Patients
Offers Telehealth

Roberto Pineda is an Ophthalmologist in Boston, Massachusetts. Dr. Pineda and is rated as an Advanced provider by MediFind in the treatment of Vascular Ehlers-Danlos Syndrome (VEDS). His top areas of expertise are Keratoconus, Cataract, Astigmatism, Corneal Transplant, and Cataract Removal. Dr. Pineda is currently accepting new patients.

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What are the latest Vascular Ehlers-Danlos Syndrome (VEDS) Clinical Trials?
The Effects Of Heart Coherence Training On Patients With Vascular Ehlers-Danlos Syndrome (HEARTMATH)
The Effects Of Heart Coherence Training On Patients With Vascular Ehlers-Danlos Syndrome (HEARTMATH)
Enrollment Status: Recruiting
Publish Date: July 01, 2024
Intervention Type: Other
Study Phase: Not Applicable

Summary: Vascular Ehlers-Danlos Syndrome (VEDS) is caused by pathogenic variants of the COL3A1 gene, resulting abnormal Type III collagen protein. This impacts the body's connective tissue and makes people with VEDS at high risk of spontaneous aortic and arterial rupture, pneumothorax, and hollow organ perforation across the age spectrum. Given this risk and high potential for lethality, VEDS is considered...

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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
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
Enrollment Status: Recruiting
Publish Date: June 04, 2024
Intervention Type: Drug
Study Phase: Phase 3

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.

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