Uploaded on Aug 9, 2008
BBNB PROUDLY SUPPORTS PATRICIA & HER SONG DUSTIN IN RAISING AWARENESS FOR THESE RARE CONDITIONS.
Patricia, who has been nearly bed-ridden for three years and cut off from the rest of the world by a series of major heath issues, is using MySpace to raise awareness about two rare diseases.
Patricia has two rare and often misdiagnosed diseases that don't allow her to work or drive.
But she has managed to find a way to reach people in the outside world; the homebound woman is using the Internet to reach out and raise awareness about her diseases.
Patricia has Ehlers Danlos Syndrome, a disease that breaks down collagen; she also suffers from Mast Cell Disease, which makes her have potentially fatal allergic reactions. As a result, Murray can't be around Latex, perfumes or even light.
Her doctor agrees such cases are extremely frustrating. Dr. Opal Alpan said, "Current medicine doesn't have either answers or medications" for her situation. In fact, he says, there is no cure for her.
But Patricia isn't giving up; she is fighting back with music. Murray invited artists to become friends on her MySpace page, where she posted information about her diseases. Murray says she has singers from Australia, Asia and Pakistan, and that they know about Mast Cell Disease and Ehlers Danlos because of her.
Patricia is so adamant about raising awareness for the diseases that she held a contest online and awarded the winner $20,000 of her own money.
Despite a life of chronic pain and endless medication, Patricia says she is happy about getting the word out with the help of singers in cyberspace.
Patricia's son Dustin also has Ehlers Danlos Syndrome, which is genetic. He is hoping to to stage a concert in the D.C.-area this fall with some of her contest winners.
Adapted from the TV interview.