Huntington's disease: the nursing process

Huntington's disease is caused by a genetic condition which has thus far escaped being understood in spite of years of research. The importance of the disease to those in medical and educational professions is great because of its devastating effects on the family unit. It is a disease for which there is no cure and no treatment other than supportive care as the disease progresses. Because the disease does not manifest itself until the fourth or fifth decade of life, the person who develops it has probably already married and had children. Since the condition is passed from parent to child in an autosomal dominant way, fully 50% of the children stand at risk of having the disease. Neurological disorders and psychological problems are the first sign the family has and these are often mistaken for other conditions, such as alcoholism. As the disease progresses, the family spends thousands of dollars on needed care and often insurance companies or other health plans will not cover these needs. Nurses need to be aware of the long‐term plight faced by a family with this condition whose only hope, at the present time, is prevention through education during the early years about the genetic component and counselling in the child‐bearing years. Early diagnosis could save countless problems for families as far as future planning of the patient at risk, for family planning and for the provision of resources for the possibility of costly medical expenses. Some families have been the brunt of needless scorn because a family member was suspected of drug or alcohol abuse by an uninformed public. Misdiagnosis, because of a group of symptoms similar to those in other conditions such as schizophrenia, has led to years of useless treatment for the wrong disorder. Since genetic disease is such a big factor in health care today, it would seem that human genetics should be added, in a basic way, to the science curriculum of school children. It should become a part, in a more advanced way, of every nursing and medical programme. Public education for those who have not been exposed to this disease and others like it can best be done through the media of print.