Chris Galvin has found a decidedly poetic way to describe a disease that is the furthest thing from beautiful. The condition took his father’s life and, Galvin always knew, threatened him as well.//
“It’s kind of like the storm that’s sitting out on the horizon that you know one day will come to shore on your beach,” says Galvin, 37. “It’s something I’ve thought about my whole life and have always had an adequate amount of fear about.”
His fears were realized last year, when he was diagnosed with idiopathic pulmonary fibrosis (IPF), a progressive scarring of the lungs in which patients’ lung function declines and they develop shortness of breath with minimal activity, and even at rest during the late stages of the disease. There is no cure; IPF took the lives of Galvin’s father (at age 45), an uncle, an aunt and a grandmother, and about 40,000 lives a year in the United States. His own diagnosis in January 2005, Galvin says, was devastating.
Yet he and his family maintain some hope for the future. They have started an initiative called Quest for Breath to help support IPF research, which includes an annual event to raise money for the fund named for their father, the Martin Edward Galvin Fund for Idiopathic Pulmonary Fibrosis Research at the University of Michigan Health System.
“Because this disease has no cure, it’s very important, especially when the government is funding less research, to pour efforts into raising money to jumpstart this research,” says Galvin, of Troy, Mich. “My family and I decided to become very involved with the University of Michigan in helping to raise funds for research, but also to help develop a community where awareness could be spread about the disease.”
He notes that the University of Michigan is doing important research about the disease that he and his family hope will lead to major breakthroughs in the future.
Nobody knows just how big the community of IPF pati
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