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Eye Doctors Face New Challenge as AIDS Causes Vision Problems

January 25, 1990

SAN FRANCISCO (AP) _ The AIDS epidemic presents eye doctors with new medical and psychological challenges, with as many as 40 percent of AIDS patients suffering some vision problem, a conference was told Thursday.

″Besides the medical questions, you’ll hear: ‘Where are you, God?’ It is the cry of Auschwitz. Believe me, your patients will ask this question in a thousand ways,″ said the Rev. William Barcus, who because of AIDS is slowly going blind.

He addressed about 100 ophthalmologists and AIDS medical and social workers from around the nation on the first day of a two-day conference. The gathering was organized by the American Foundation for the Blind and The Lighthouse for the Blind and Visually Impaired.

Unaccustomed to dealing with terminally ill patients, eye doctors increasingly have to counsel patients who despair over the disease and society’s perceived lack of compassion, said Barcus, who heads a ministry for AIDS patients at Episcopalian Grace Cathedral in San Francisco. They also must deal with self-pity, panic and even terror in AIDS patients.

″There are two things we live in deadly fear of: the first is blindness ... the second great terror is dementia,″ said Barcus, who was diagnosed with AIDS five years ago. ″While these may be theory to you, to us they are terribly real, nerve-shattering, heartbreaking.″

Precise figures are unavailable on the number of AIDS patients who suffer from some sort of vision problem, but estimates range from 15 percent to 40 percent, according to Dr. Robert E. Neger, who specializes in opthalmology for AIDS patients in San Francisco.

As of Nov. 30, 1988, there had been 115,158 cases of AIDS reported in the United States since 1981, and 68,441 AIDS deaths, according to the federal Centers for Disease Control in Atlanta.

Many of the opportunistic infections that afflict AIDS patients can damage vision.

Kaposi’s sarcoma can cause purple-red growths on the eyelids or conjunctiva, partially blocking vision. Toxoplasmosis damages the retina and cryptococcal meningitis damages the optic nerve.

Cytomegalovirus, a virus commonly found in the general population, can cause serious eye damage and is most likely of all the opportunistic infections to cause blindness in AIDS patients. While it can be treated, lost vision cannot be restored.

Marsha Young, an Oakland psychologist who works with visually impaired AIDS patients, said they can be devastated, and even contemplate suicide.

″Some patients have found themselves getting steadily worse with AIDS and now they have this additional blow,″ she told conferees.

″It is normal for a person to mourn the loss of sight, but ... for a person with AIDS to start to mourn is sometimes a way of giving up, and it’s accompanied by all the feelings that go along with that frustration, hopelessness, powerlessness,″ she said.

Dr. William Shekter, chief of ophthalmology at Kaiser Permanente Medical Center in San Francisco, said in a conference address that until the last few years of the AIDS epidemic few eye doctors had to so often face the death of their patients. They encountered death mostly in children blind from birth, severe trauma patients or elderly people with diabetes or advanced glaucoma.

Not since the end of World War II, when thousands of soldiers returned home with vision-damaging injuries, have ophthalmologists faced such a dramatic change in clientele, he said.

More vision problems are being treated in AIDS patients because earlier diagnosis and improved treatment has prolonged their lives, according to officials of the conference.

Professionals at the conference were cautioned that few agencies now providing traditional services to the blind and visually impaired are prepared to offer rehabilitative and counseling assistance to the 1 million to 1.5 million Americans estimated to be infected with the AIDS virus.

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