What Is Cystic Fibrosis And Family Stress

CYSTIC FIBROSIS of the pancreas, or mucoviscidosis, is a relatively common con- genital disease which was almost unknown 20 years ago. At that time most patients afflicted with it died in infancy from malnutrition and bronchopneumonia, and the underlying disease was unsuspected. Since then, knowledge of cystic fibrosis has increased. With the aid of earlier diagnosis and informed therapy, life has been prolonged in most cases to childhood and in some to adolescence or early adult life. As a result there are increasing numbers of surviving children and young adults within disease who present many new problems not only to their physicians but also to their families and communities. Their survival has also made it apparent that cystic fibrosis may have many clinical forms in older children and adults.

Although cystic fibrosis is well known to pediatricians, it often goes unrecognized by other physicians. A brief description of the disease is not easy to provide. Many or perhaps all of the exocrine glands function abnormally. The exocrine glands are those which pour their secretion by some route to the outside of the body, in contradistinction to the endocrine glands which empty their product into the bloodstream. In cystic fibrosis the exocrine glands chierty affected are the mucous glands of the bronchi and nasal passages, the sweat glands, and the digestive glands. To make the matter more complex, these glands are affected in somewhat different ways.

Family Stresses Cystic fibrosis has become a puljlic health problem because of the great, often devastating, strain which it places on the many families involved. These fami- lies need help of all kinds, financial, medical, educa- tive, and supportive. The pressure and anxieties re- sulting from cystic fibrosis in the family may be grouped into three categories : (1) those directly con- cerned with the care of the patient; (2) the financial stresses; and (3) the prolilems presented by the di- sease’s hereditary nature.

First, tiie immediate care of the patient requires supervision by a doctor or clinic familiar with the disease, able to instruct the mother, and able to pro- vide her with continued emotional support. At home the child needs daily vitamin supplements, salt tab- lets, and usually antibiotics of some sort. He does better on a planned diet, which the mother nnist learn how to prepare. The mother of the child with cystic fibrosis has many difficult decisions to make. Can Jim play with other children I Is isolation or exposure to infection the greater risk? How nuich exercise can the child stand ? Will other mothers fear that his cough means a contagious disease ? Shall he go to school or have home teaching? Can he go swimming? (The an- swer is yes.) How can his condition be explained to his grandparents and to the neighbors?

The child himself, as he grows older, learns that he is different from other children. He may also learn that many children with cystic fibrosis die befoi’e they grow up. As he reaches adolescence he has new worries. What kind of work will he be able to do? Should he marry? How long a life should he plan for? With these problems added to the usual strains of adolescence, it is not surprising that some adoles- cents with this disease become deeply depressed.

The genetic implications of the disease present other problems. The most pressing for the parents is often the question of whether or not to have more children. Shall they take a chance, and have other children of their own ? Or shall they adopt a child, go in for artificial insemination, or perhaps get a divorce and begin over again? Sometimes the two sets of grandparents come into the conflict, each set convinced that the bad inheritance must come from the other. Finally, many families feel isolated by what seems to them a unique problem, and many feel resentment because of the delay in diagnosis which resulted from their doctor’s lack of Imowledge about the disease. Many have been frustrated in their attempts to olj- tain assistance from public agencies to meet the hea\’;\’ burden imposed on them by the disease.

by Abdullah Sam
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