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Plastic surgery often has to be repeated over and over. Lynne Ann Courtemanche, 35, of Manhattan, has spent 18 years undergoing surgery on her face and body; the tumors are removed as soon as they appear. For Courtemanche, president of the National Neurofibromatosis Foundation, the continuing ordeal is preferable to no treatment at all. She recalls seeing, at 17. a picture of John Merrick. Says she: "I thought, 'This is what I'll look like in a couple of years.' I didn't really know if I wanted to live that long."
Though neurofibromatosis is still poorly understood, medical researchers have recently been focusing on a blood protein that is unusually high in some victims of the disease. But a cure seems far off, and Courtemanche and the foundation are concentrating their efforts on showing victims how to live with the disorder. Says Courtemanche: "Merrick bore up with tremendous dignity and grace. You have to develop an inner peace with yourself — otherwise you're just condemned to a living hell."