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Program on Lung Function : Asthma Sufferers Learn to Lead Normal Lives

January 07, 1986|URSULA VILS | Times Staff Writer

Their image is one of goofing off from work, of feigning illness to avoid housework, of manufacturing sickness as a way to escape responsibility.

They are among the estimated 9 million Americans who suffer from asthma, an illness usually caused by allergies that are often inherited. It is sometimes triggered by stress. But it is a chillingly real malady: Asthma kills nearly 5,000 Americans a year.

Working to alter those statistics are Dr. J-S Sue Johnson, medical director, and the staff of Barlow Hospital, an 83-year-old facility tucked in a hollow just west of Dodger Stadium in Elysian Park.

Focus on Lung Diseases

Originally a facility for people with tuberculosis--a disease largely conquered by medical advances--the hospital, which is affiliated with the USC School of Medicine, now focuses on other lung diseases, such as emphysema, asthma and occupationally related respiratory problems.

And while medical intervention, either emergency room care or longer hospitalization, is necessary for severe asthma, Sue Johnson says that the key to managing the problem lies with educating the patient about his or her problem, teaching the patient to monitor lung function, to be aware of the warning signs of an asthma attack and to take medication precisely as prescribed.

To that end, Johnson has established a library at Barlow Hospital, where patients, their families and others concerned can find printed and audio-visual materials on asthma and other respiratory ailments.

Shelves of Booklets

The Asthma Center Library, housed in a former residential cottage for tuberculosis patients, includes a reading room, shelves of books and pamphlets and an audio-visual center for viewing filmstrips and slides.

"It is a super-specialized library open to lay persons," Johnson said. "We are not aware of any other library that is specialized in this way.

"It took $50,000 to remodel the library, which has a hypo-allergenic environment. The draperies are fiberglass, the furniture is wood--not particle board or pressed matter that can release formaldehyde, which can trigger allergies. The rug is a tightly woven outdoor fabric with a low dust level, and the upholstery on the chairs is a smooth fabric that resists dust and is easily cleaned.

"Even the pictures on the wall are oriented to asthma sufferers--here's one that shows plants that cause allergies in many asthma victims."

Johnson hopes to open the library also to high school and junior high health teachers, especially since between 2 million and 3 million asthma sufferers are children.

"Twenty-five percent of time lost from school is attributed to asthma," she said.

Limited Hours

Johnson's only regret at the moment is that the hours the library is open are limited by lack of volunteers to staff it, a situation she hopes to remedy. She returned to the necessity--and the benefits--of educating asthma patients about controlling their illness.

"My patient compliance (in their own care) here is 80%. We bring in the whole family. We do not just put these patients in a closet. We want them to lead a normal life.

"We help them see a totally different quality of life. I had one woman of 38, a criminal lawyer, who had a two-week admission at Barlow two years ago. Since then she has never been to an emergency room. Instead of missing work, she became a workaholic, but she and her husband are cutting back on their work to travel now because they are so enthusiastic about their quality of life."

Johnson is especially concerned about the psychosocial problems that asthma can create, especially in a marriage.

"We see a lot of marriages that have broken up already," she said. "This is one of the most neglected populations in our society (for marital counseling and understanding).

Doses of Steroids

"We have one woman patient, a 33-year-old psychologist with a master's in children's counseling. She lives in Northern California and when she developed severe asthma doctors treated her with massive doses of steroids. Because of the medication she gained 90 pounds, weighs 245. Her husband wanted to divorce her.

"She came here last February, and we found her problem was more with the drug side effects than the asthma. We treated her and we continue to manage her care by telephone.

Less Satisfying

"Both she and her husband are intelligent people, but they were totally ignorant of her problem. We could not give her enough material to read."

Sometimes the ending is less satisfying.

"We have a woman patient who is 28 and who was married two years ago. She has only 20% of her lung function. When she got married her husband had a cat, and she also married the cat. We tested her and the only thing we could find that she was allergic to was--cats.

"Now it's a choice of her or the cat. The husband is thinking about it."

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