An Alzheimer's researcher who is also a patient

(CBS News) A study Wednesday in the Journal Nature got our attention. Researchers say they've discovered a genetic mutation that fights Alzheimer's disease. It's very rare -- fewer than one percent of people have it. But it could help doctors as they work to develop future treatments.

We met with a leading researcher who has been working on a cure for Alzheimer's disease. For her, the search for that cure has become very personal.

Rae Lyn Burke has helped develop treatments for HIV, herpes, and hepatitis B. In the 1990s, as one of the world's foremost vaccine researchers, she turned her attention to Alzheimer's disease and was on the team that created an experimental drug called bapineuzumab.

"I really believed that it was going to work," said Burke. " I saw it work in mice."

It works by clearing the plaques in the brain that are hallmarks of Alzheimer's disease.

New dye may lead to earlier Alzheimer's diagnosis
Results from key Alzheimer's studies could decide future of treatment

Dr. Lennart Mulke of the Gladstone Institute remembers Burke's passion. "You have to have a certain level of obsession, and so you will be doing things in your mind under the shower and while you drive to work, and I think Rae Lyn was exactly in that mold."

It was that very personality trait that made her realize something was terribly wrong.

"One of the things I did while commuting ," said Burke, "was play with numbers in my head. ... I couldn't do that like I used to do it. And I said, 'Oh, this is odd.'"

The formal diagnosis came in 2008: Alzheimer's.

Asked how she was, Burke said, "Gosh, um, how old am I? Sixty-something."

She's 64 and now, even the easiest math is impossible.

"Its one of those incredible ironies of life, isn't it?" Burke said. "You never know what the end game is going to be."

But Burke never lost her passion for discovery. So she decided to help test the very drug she helped create. Every three months she takes the short trip to the University of California San Francisco, where the trial is based, and receives bapineuzumab.

"I think it's slowing the decline," said Burke of the trial. "But I don't think it's making me better."

Burke struggles with simple tasks like counting money and making coffee, but with the support of her husband, Reg Kelly, she lives an active life.

But she's going through a part the disease, where she is still with it enough to remember what she's lost, and yet fear what she's going to lose. "It is cruel," she said. "It is cruel."

Rae Lyn Burke is like two people: the scientist trying to figure out how to treat this disease, and then the patient who knows she is losing more and more each day.

  • Jonathan LaPook

    Dr. Jonathan LaPook is the medical correspondent for the CBS Evening News. Follow him on Twitter at @DrLaPook

Comments