About Us
What is vascular Ehlers Danlos Syndrome
Who are we? And why have we created our own Nonprofit organization 501 c3
Who are we? And why have we created our own Nonprofit organization 501 c3
What is Vascular Ehlers Danlos Syndrome (vEDS)?
vEDS is a rare, single-gene, autosomal dominant disease caused by mutations in the body’s COL3A1 gene, and is the most severe and life-threatening form of Ehlers Danlos Syndrome (EDS). Estimates vary, but the most recent state the disease affects approximately 1 in 50,000 people. The resul
What is Vascular Ehlers Danlos Syndrome (vEDS)?
vEDS is a rare, single-gene, autosomal dominant disease caused by mutations in the body’s COL3A1 gene, and is the most severe and life-threatening form of Ehlers Danlos Syndrome (EDS). Estimates vary, but the most recent state the disease affects approximately 1 in 50,000 people. The result is an impairment of the body’s normal formation of collagen, the glue that holds everything together, causing weakening of the skin, organs, arteries, and blood vessels. Individuals with vEDS present with symptoms like easy bruising, thin skin and hypermobile joints that are prone to dislocation. The vascular type, in particular, can very easily go undiagnosed because on a day to day basis, many patients do not experience noticeable symptoms. Instead, the disease is episodic, revealing itself in spontaneous arterial or organ ruptures, making it especially dangerous. Those who present with symptoms of pain in a hospital setting need to be treated immediately as trauma patients, and intervention must be carefully decided on, as surgery often leads to further trauma and events. Sadly, the average life expectancy for those who suffer with vEDS is a short 48 years, though many experience life-threatening episodes long before this age. There is currently no treatment and no cure. Patients are advised to avoid certain activities, such as contact sports, surgeries and pregnancies, that put a great deal of stress on the body, and many are prescribed beta-blockers to lower their blood pressure in an effort to take some of the stress off of their blood vessels and arteries. Beyond these small precautionary measures, there is really nothing that can be done to stop the disease.
Courtesy of the DEFY Foundation
Click here to find links to further information and other vEDS organizations.
Who are we? And why have we created our own Nonprofit organization 501 c3
Who are we? And why have we created our own Nonprofit organization 501 c3
Who are we? And why have we created our own Nonprofit organization 501 c3
Welcome to the Laufer Family nonprofit page. Please join us in showing respect to our four brothers, Jack, David, Greg and Kurtis Laufer by learning more about the genetic disorder that took them from us too soon. We believe with more awareness comes more research. Our family has created a nonprofit organization dedicated to raising fund
Welcome to the Laufer Family nonprofit page. Please join us in showing respect to our four brothers, Jack, David, Greg and Kurtis Laufer by learning more about the genetic disorder that took them from us too soon. We believe with more awareness comes more research. Our family has created a nonprofit organization dedicated to raising funds and spreading awareness of the genetic disorder that has taken so much from us. We currently have 14 genetically confirmed vEDS patients in our family. Please consider contributing to our nonprofit organization so that everyone with vEDS can receive the medical care and support they need through wider awareness in the medical communities, expanded research efforts and improved medical care for this genetic disorder.
ALL funds raised by our nonprofit will go directly to organizations that are currently researching Vascular Ehlers Danlos.