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

A healthy 27-year-old Iowa woman had her world turned upside down after being told she will almost certainly develop a form of dementia that strikes early.

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

The Iowa server was quick to undergo a battery of relatively new and highly specific blood tests to determine her genetic risk, as she had a 50 percent chance of carrying the gene and therefore a considerable 10 to 15 percent chance of being diagnosed.   

FTD is far less common than Alzheimer’s disease – accounting for about 20 perce nt of dementia cases in the US – but one that afflicts patients much earlier, in their 30s and 40s and in rare cases 20s.

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

Alyssa Nash [shown middle with her father] carries a genetic mutation for a rare form of dementia that can alter a person’s personality

She said that receiving the news of her genetic predisposition has changed her outlook on life. 

‘Put your feelings out there. It’s okay not to be okay at times. It’s a heavy thing to carry, but knowledge is power.’ 

A 2017 examination of 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  getting an FTD diagnosis.  

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

Many people who first start experiencing symptoms of FTD seek help from mental health professionals, and getting the correct diagnosis can be a long road.

Dr Keith Vossel, a neurologist at the University of California, Los Angeles, told DailyMail.com: ‘Normally when people develop frontal temporal dementia, they develop difficulties with language or some changes in personality. 

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

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

‘They’re usually young, oftentimes younger than 60 and… because there’s lack of insight [as well as] personality changes, there can be higher burden on family and caregivers than the experience of the patient in terms of the impact of the disease.’ 

Ms Nash’s father started showing drastic personality changes as she was entering high school, but he would not be diagnosed with FTD for another seven years.

She described the toll it took on her family and on herself personally, suddenly having to become a part-time caregiver while keeping his condition hidden from her school mates.

She told Fox News: ‘The biggest challenge was seeing him change completely into someone else and become someone I never thought he could be. And having to grow up in that atmosphere — it was tough.’

Once she found out the condition had a basis in genetics, Ms Nash was quick to get tested.

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

Doctors run a battery of blood tests to determine if a person has a specific genetic mutation that will heavily influence whether she develops FTD or a related condition.

While there are no specific diagnostic tests for FTD, genetic testing is becoming 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.   

 Those 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 most often 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 WORDY..

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

‘I did take it really hard when I first found out,’ she said. ‘It took years before I could speak about it publicly.’

Short of genetic testing to determine someone’s predisposition, there are no specific tests for diagnosing FTD. Doctors typically rely on gathering a person’s medical history, conducting a detailed neurological examination, and performing an MRI. 

Frontotemporal dementia falls under the same umbrella of diagnoses that encompasses Alzheimer’s disease, but it’s far less common, with an estimated 50,000 to 60,000 cases in the US at once, the majority of whom are between 45 and 65 years of age.

The symptoms of FTD also look very different from Alzheimer’s 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 one’s 20s, in addition to memory and mobility problems.

Alzheimer’s devastates the whole brain over time, while FTD afflicts the frontal lobe of the brain, the region that plays the largest role in determining personality traits, forming memories, and dictating dopamine-related activities like motivation and future planning.

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

People with undiagnosed FTD are often started on psychiatric medications meant to treat one or several of those symptoms, such as selective serotonin reuptake inhibitors (think Prozac or Lexapro) or stimulants to treat feelings of apathy.

FTD, like Alzheimer’s, worsens as the person grows older. But people with FTD often begin experiencing symptoms of the degenerative disorder earlier than those diagnosed with Alzheimer’s. Still, diagnosis often after the disease has reached later stages.