A mystery illness killed a boy in 1969. Years later, doctors learned what it was: AIDS.


By Steve Hendrix | The Washington Post

The 16-year-old boy had the kind of illness that wouldn’t be familiar to doctors for years: He was weak and emaciated, rife with stubborn infections and riddled with rare cancerous lesions known as Kaposi’s sarcoma, a skin disease found in elderly men of Mediterranean descent.

The boy, Robert Rayford, died on May 15, 1969, in St. Louis. It would be more than a decade before doctors started seeing similar cases among gay men in New York and California. In 1982, with the numbers of sick surging, the disease got a name: Acquired Immune Deficiency Syndrome. The AIDS epidemic had begun.

But the mystery of Robert R. – as he was long known to researchers – would linger in the minds of the physicians who had cared for him. With a sense that something important could someday be learned, two doctors collected tissue samples after his death and froze them for almost 20 years.

In time, the case of a poor young African American who apparently never left the Midwest would add a surprising twist to the understanding of a disease many connected with gay white men in cosmopolitan coastal cities. Researchers would come to see Rayford as the country’s first known death from a strain of the human immunodeficiency virus, HIV, the virus that causes AIDS.

“Every time this date comes around, I think about this young man and the hell he went through,” said Memory Elvin-Lewis, a microbiologist who was central to the case. “It’s burned in my brain.”

For some, the assertion that Rayford died of AIDS may never be fully proved. Anthony Fauci, a renowned AIDS expert and head of infectious-disease research at the National Institutes of Health, said the inferior state of antibody tests at the time make the case of Robert R. both fascinating and frustrating.

“It certainly could be true, and may even be likely that it’s true,” Fauci said, “but the absolute nailed-down proof isn’t there.”

Robert was already struggling when he arrived at St. Louis’s City Hospital in late 1968. Then 15, the boy was suffering from swollen legs and genitals, fatigue and hemorrhoids. But according to doctors at the time and journalists who went back over the case years later, neither Rayford nor his family were very forthcoming with information.

“He would never say a word to me,” said Elvin-Lewis, now 85 and still working.

The uncommunicative Rayford might have had a mental disability, doctors said later. When they found he had chlamydia, a sexually transmitted bacterial infection, he dodged questions about his sexual activity or would say only that he had been with a neighborhood girl. But there was physical evidence he had engaged in homosexual activity, willingly or not.

More frustrating, his doctors couldn’t come up with a clear diagnosis, and none of their treatments worked. Over 15 months, he was moved twice to other hospitals and his case attracted several specialists. One of them was Elvin-Lewis, a newly hired microbiologist at Washington University Dental School with an expertise in chlamydia. She was …read more

Source:: The Mercury News – Nation, World

      

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