Observations on Patient and Family Coping with Huntington's Disease

Abstract

Huntington's Desease, a presenile neuropsychiatric disorder, with onset usually in middle age, is a degenerative terminal illness clinically identifiable approximately a decade and one half prior to death. As Huntington's Disease is an autosomal dominantly inherited disorder, the diagnosis in a family member has implications for the siblings and offspring of the affected individual. No definitive method for the preclinical detection of the carriers of the mutant gene is known. The consequences of this diagnosis on the quality of life for the clinically normal potential carriers of this disorder is discussed. The significance of genetic counseling and in particular a description of the phases in psychological coping is presented to enable informed decision making by family members.