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Center Opens to Assist Victims of Vision Loss

November 16, 1986|ANDREW C. REVKIN | Times Staff Writer

A Van Nuys hospital Saturday inaugurated one of the nation's first centers providing medical and psychological support for people suffering from retinitis pigmentosa, an incurable form of blindness that afflicts as many as 400,000 Americans.

Staffed by blind and sighted volunteers and hospital staff, the Retinitis Pigmentosa Vision Loss Adjustment Center at Valley Hospital Medical Center will be unusual.

It will be the first hospital-based facility combining medical and psychological services as well as job training and "daily living" training for those losing their eyesight, said Hallie Hetzel, a hospital vice president.

Although the focus is on retinitis pigmentosa, those with other forms of vision loss are welcome as well, she said.

About 8,000 in Valley

The hospital estimates that there are about 8,000 victims of retinitis pigmentosa in the San Fernando Valley, many of whom have not been diagnosed, said administrator David Gustafson.

Examinations that screen for the disease and other medical services at the center will be covered by most medical insurance. Counseling and training will not be covered, Gustafson said, but the hospital will establish a sliding scale of charges based on what a patient can afford.

Without counseling and support, progressive loss of eyesight can lead to a host of psychological problems, including alcoholism and drug abuse, said Dr. Maurice Zeitlin, a psychiatrist at Valley Hospital. "It's not just the disease that must be dealt with," he said. "It's a whole-person problem. That's what we'd like to address."

At an opening ceremony attended by about 100, much of the credit for the creation of the facility went to Helen Harris, a Woodland Hills woman who has suffered from retinitis pigmentosa since childhood. Harris created RP International, an organization that each year raises hundreds of thousands of dollars for research into the cause of the disease and its possible cures.

Harris said 200,000 to 400,000 people in the United States have been diagnosed as having one of the many forms of retinitis pigmentosa, a generally inherited condition that causes the deterioration of the retina, the layer of light-sensitive cells inside the eye that transmits images of the outside world to the brain.

First Symptom

The first symptom of the disease is a progressive deterioration of night vision. Then comes a constriction of the visual field. "It's like looking through soda straws," said Harris, who has lost all vision in one eye and is nearly blind in the other.

The disease can develop in a predictable, inexorable fashion, as it did in two of Harris' three sons.

But it can also strike seemingly at random and develop remarkably quickly, as in the case of Michelle Burke, the cheery 7-year-old poster girl for RP International, who attended the ceremony.

Michelle's mother, Debbie, from San Diego, said she noticed that Michelle's eyes began to wander when she was 2 months old. By the age of 6 months, Michelle was totally blind. There was no history of retinitis pigmentosa in the family. "We'd never heard of it," Burke said. "We couldn't even pronounce it."

The center, situated in a converted apartment building behind the hospital, will be open to the public in about a month, said Judith Baines, a Valley Hospital spokeswoman.

During business hours, those experiencing loss of vision can walk in without an appointment to meet others with similar ailments or to schedule an examination.

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