If you found out today you were at a high risk of being diagnosed with Alzheimers disease, what would you do? Crawl under the covers? Take that exotic vacation? Wish youd never found out?

Or would you change the way you live?

When a genetic test revealed that Jamie TenNapel Tyrone had a 91 percent chance of developing Alzheimers, she slipped into a deep depression. She thought about suicide.

Tyrone had been worried about multiple sclerosis. Thats why she took the test, to see if she had any of the genes associated with MS following some neurological symptoms. At 49 years old, Alzheimers disease wasnt anywhere on her radar.

I was devastated, Tyrone said. She was also critical about the way the 2009 study was designed, without genetic counseling before or after, leaving her completely unprepared for the shock of her results.

Then she surprised herself. She wrote a book about her experience to guide others through the pros, cons and pitfalls associated with genetic testing. It was co-written with geriatric neurologist Marwan Noel Sabbagh.

I think people now can get commercial genetic testing (services) like 23andMe and not understand the consequences of what theyre getting tested for, Sabbagh said.

Fighting for my Life: How to Thrive in the Shadow of Alzheimers describes the emotional journey Tyrone went through after participating in genetic testing as part of a research study 10 years ago.

The basis for the study was to find out if, or how people would change their lifestyle if they knew they had a high risk of disease by using genetic testing. The research showed that knowing the risk of disease did not lead to significant lifestyle changes.

Without the counseling, Tyrone said she felt abandoned by researchers when she found out she has two copies of the apolipoprotein E4 gene, which is linked to an increased risk for Alzheimers.

Afraid of the stigma associated with the disease, she avoided discussing her results at first, fearing that shed be discriminated against or ostracized.

There are laws that protect people from certain forms of discrimination related to genetic information, but theyre not all-inclusive.

The Genetic Information Nondiscrimination Act protects individuals from being denied health insurance or charged higher premiums based only on the genetic predisposition to a disease. It also means that employers cant make decisions to hire, fire, segregate or otherwise mistreat employees based on the results of genetic testing.

But it doesnt protect access to long-term care, life or disability insurance.

For three years I didnt talk about it and I became very depressed, said Tyrone, who lives with her husband in Ramona. I contemplated not being in the world.

After years of depression, suicidal thoughts, therapy and being diagnosed with post-traumatic stress disorder, Tyrone now volunteers as a research collaborator, or what she calls a lab rat. She wants to help scientists find a cure for the disease and hopes that participating might help her to prevent the onset of the disease, or cure her someday if needed.

The first person cured of Alzheimers disease is going to be a research participant, Tyrone said, paraphrasing UsAgainstAlzheimers founder George Vradenburg.

If she had it to do over again, would she take the test? Tyrone said she probably wouldnt.

I truly believe that if I had genetic counseling during the consent process, I would have chosen not to be tested, she said.

Even still, Tyrone said finding out about her risk has been a gift in some ways because it prompted her to help others through public speaking and writing her book. She hopes her story can help people to decide if and when to take genetic tests in search of potential health risks.

Co-author Sabbagh said he generally advises that genetic testing only be done if there are already symptoms present. He also suggests working to increase brain health early on before memory loss symptoms begin.

The fact is that by the time you come into the office to get seen for your memory issues, the changes in the brain have been accumulating for a long time, he said.

Now 59, Tyrone said shes cognitively healthy, but still searching for answers to the mysterious neurological issues that led her to the testing in the first place.

Read the rest here:
When genetic testing goes sideways: One woman's cautionary tale - The San Diego Union-Tribune

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