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Neurofibromatosis: A Handbook for Patients, Families, and Health Care Professionals

Neurofibromatosis is the umbrella term for three distinct genetic disorders that share a hallmark manifestation—tumor growth in the tissues that surround nerves. None of these disorders is the so-called “Elephant Man’s disease,” a persistent misconception that sometimes alarms people who have just received a diagnosis themselves or for a child. Though they are often referred to as “rare,” the neurofibromatoses are surprisingly common. They are more prevalent than cystic fibrosis, Duchenne muscular dystrophy, Huntington’s disease, and Tay-Sachs disease combined. This book provides a practical guide to diagnosing, treating, and coping with each type of neurofibromatosis.