‘Knowledge is power’: healthy Iowa woman, 27, told she has 95% chance of developing dementia

A healthy 27-year-old Iowa woman’s world was turned upside down after she was told she will almost certainly develop some form of early-onset dementia.

Alyssa Nash discovered she possesses a gene mutation that will almost certainly doom her to the same fate as his father, who “turned completely into someone else” in his 30s, seven years before being diagnosed with frontotemporal dementia (FTD).

The Iowa server quickly underwent a series of relatively new and very specific blood tests to determine her genetic risk, as she had a 50 percent chance of carrying the gene and thus a significant 10 to 15 percent chance of being diagnosed.

FTD is much less common than Alzheimer’s disease – accounting for about 20 percent of dementia cases in the US – but one that affects patients much earlier, in their 30s and 40s and rarely in their twenties.

The condition is often misdiagnosed as schizophrenia because it completely changes the victim’s personality, causing apathy and social withdrawal, a lack of empathy, inappropriate behavior in public, obsessive-compulsive behavior, poor judgment, and impulsiveness.

She said the news about her genetic predisposition has changed her outlook on life.

“Bring out your feelings. It’s okay to be okay sometimes. It’s hard to bear, but knowledge is power.’

A 2017 study into the causes of FTD reported that people who carry mutations on one of three genes — MAPT, GRN, or C9orf72 — have a 90 to 100 percent chance of receiving an FTD diagnosis.

Still, having the mutation does not equate to a diagnosis, and Ms. Nash uses this information to enjoy her life to the fullest.

Many people who first begin to experience symptoms of FTD seek help from mental health professionals, and it can be a long road to getting the right diagnosis.

Dr. Keith Vossel, a neurologist at the University of California, Los Angeles, told DailyMail.com: “Normally, people who get frontal temporal dementia develop problems with language or changes in their personality.

‘And they often have less insight into their problems than patients with Alzheimer’s disease.’

The condition usually takes a large toll on the victim’s family, not just the victim, Dr. Vossel said.

“They are mostly young, often under 60 and… because there is a lack of understanding [as well as] personality changes, there may be a greater burden on family and caregivers than the patient’s experience in terms of the impact of the disease.’

Mrs. Nash’s father started showing drastic personality changes when she started high school, but he wouldn’t be diagnosed with FTD for another seven years.

She described the toll it took on her family and on herself personally as she suddenly had to become a part-time caregiver while hiding his condition from her classmates.

She told Fox News, “The biggest challenge was watching him completely turn into someone else and become someone I never thought he could be. And growing up in that atmosphere was tough.’

Once she discovered that the condition had a genetic basis, Ms. Nash quickly got tested.

According to Dr Vossel, ‘There is a strong family history of frontal temporal dementia and about 40 percent of cases and we’re getting better at finding genetic mutations associated with those familial diseases.’

Doctors perform a series of blood tests to determine if a person has a specific genetic mutation that will have a major impact on developing FTD or a related condition.

While there are no specific diagnostic tests for FTD, genetic testing is emerging increasingly common and useful. The tool has become so reliable and convenient that companies like 23&me have added a feature that scans for evidence of a genetic predisposition to Alzheimer’s disease.

These mutations are on one of three genes: C9ORF72, MAPT or GRN. C9 mutations are the most common cause of genetic FTD.

They are also the most common cause of genetic ALS, a fatal and progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.

Mutations on the MAPT gene usually lead to behavioral FTD – the type that causes drastic personality changes, while GRN mutations cause both behavioral FTD, a progressive language and/or speech disorder known as primary progressive aphasia (PPA), and Parkinson’s . IS THIS NECESSARY? bit long winded..

Because her father carried one of the mutations, Ms. Nash already had a 50 percent chance of also carrying one. It turned out she did.

“I had a really hard time when I first found out,” she said. “It’s been years before I could speak about it publicly.”

Aside from genetic testing to determine a person’s predisposition, there are no specific tests to diagnose FTD. Doctors usually rely on collecting a person’s medical history, performing a detailed neurological exam, and performing an MRI.

Frontotemporal dementia falls under the same umbrella of diagnoses that includes Alzheimer’s disease, but it is much less common, with an estimated 50,000 to 60,000 cases in the US at a time, the majority of which are between the ages of 45 and 65.

The symptoms of FTD also look very different from Alzheimer’s disease, which begins to manifest as memory loss and difficulty performing familiar tasks. But FTD is different. It causes drastic personality changes that can develop as early as your 20s, in addition to memory and mobility problems.

Over time, Alzheimer’s destroys the entire brain, while FTD affects the brain’s frontal lobe, the area that plays the greatest role in determining personality traits, forming memories, and dictating dopamine-related activities such as motivation and future planning.

People with FTD therefore often experience apathy, depression, a lack of inhibition or social tact, impulsiveness, and difficulty with language. The condition can be confused with psychiatric disorders such as schizophrenia, clinical depression, and bipolar disorder.

People with undiagnosed FTD often are started taking psychiatric drugs intended to treat one or more of those symptoms, such as selective serotonin reuptake inhibitors (think Prozac or Lexapro) or stimulants to treat feelings of apathy.

FTD, like Alzheimer’s disease, worsens as the person ages. But people with FTD often begin to experience symptoms of the degenerative condition earlier than those diagnosed with Alzheimer’s. Yet the diagnosis is often made after the disease has reached a later stage.