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Floating just off the sandy crescent of California coastline at La Jolla Shores Beach, Matthew Joyce straddles a surfboard, facing out to sea. He studies the rhythm of the water -- a gentle rise and fall, so similar to the rhythm of breathing -- spots a wave he likes, turns the board and paddles hard. In two seconds he is standing, legs strong but thin as saplings, his curly brown hair lit up like a halo in the early morning sunlight. As the wave lifts him, he steps toward the board's nose, hangs ten, and then turns and dances in the other direction, a spider in a wet suit performing the difficult move surfers call a "walkback."He turns forward again and, as the wave dies in a burst of froth, expertly flips his board and drops into the water.
The whole performance takes less than a minute and looks like something Neptune's choreographer developed to demonstrate the joy of being alive. For 20-year-old Matt, surfing is a celebration of life. Three years ago he lay in a Los Angeles hospital "about as close to death as anybody I've seen who didn't die," says his doctor, Mark Pian. He was breathing with the help of a machine that pushed air into his diseased lungs. His weight had dropped to 70 pounds, and he was coughing up blood.
Unlike the three dozen other surfers in the water on this perfect morning, Matt has cystic fibrosis, a fatal genetic disease that afflicts about 30,000 Americans. But through a combination of medical technology, devoted doctors, the support of family and friends, Matt's own determination, and the remarkable sacrifice of two strangers, the young surfer is much more than just alive. On this fine day, Matt Joyce is breathing easy -- through someone else's lungs.
A few hours after his morning surf, Matt sits in the backyard of his grandparents, Anthony and Frances Montisano. He pricks a finger to test his blood sugar level, and says, "All I wanted is what every other kid wanted, to be normal."
But normalcy is the first thing taken from people with cystic fibrosis. The disease has a simple cause: a defective gene that interferes with the normal movement of salt and water in and out of cells. The consequence of this -- thick, sticky mucus -- seems relatively benign until one considers the essential role mucus plays in the functioning of the lungs, pancreas and other organs. Just how essential may be evident very early. Many CF sufferers are diagnosed as infants because the thick mucous lining keeps pancreatic enzymes from getting to the intestines. Nutrients can't be properly absorbed and, in medical terminology, the infant "fails to thrive." This problem can be addressed with a regular intake of enzymes and vitamins, but, in later years, some people with CF develop painful bowel obstructions or, like Matt, diabetes.
Mucus plays an even more critical role in the lungs. Certain species of bacteria -- harmless to healthy people -- thrive in CF patients, forming infectious colonies that damage the lung tissue to the point where even a cold can be life-threatening. Eventually, the patient either gets a set of new lungs or suffocates.
There are at least 1,000 known mutations of the gene that causes CF, and every patient's symptoms are somewhat different. While there have been steady advances in treatment, some patients still die in their teens; others live into middle age, hold jobs, have children -- even run marathons.
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