'Totally backfired': Pitfalls of genetic testing
CHICAGO - Wendy Nelson watched her mother slowly die of Alzheimer's disease, unable to move or swallow at the end."All her pleasures of life were gone," Nelson said.
Yet few support services are available to help people deal with the implications of APOE4 testing, according to interviews with more than a dozen neurologists and genetic counselors. Alzheimer's patients and caregivers face a shortage of genetic counselors to explain the tests and help them navigate the psychological, medical, financial and legal consequences.
When her father's memory began to fail a year later, one of her two sisters doubted it could be Alzheimer's, Nelson said. Nelson knew he had to have the disease, because of her genetic test results. Nelson's eldest daughter, Lexi, 24, who works in data analytics, turned to research showing that lifestyle changes such as weight lifting can improve cognitive function."I've tried really hard to improve my sleep, I’m exercising a lot," she said.
She is working her way through a bucket list of trips. In February, she climbed Mt. Kilimanjaro to raise money for a cancer charity, and she would like to visit Patagonia, the Greek Islands, South Africa, possibly Antarctica. "With this drug, it behooves us to check," said Dr. Sarah Kremen, a neurologist at Cedars-Sinai in Los Angeles.
Yet there is a shortage of genetic counselors to help families deal with the implications of having two copies of APOE4.
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