Raising awareness of a silent crisis

The liver is an organ that filters toxins from blood, supports digestion through the production of bile, and helps regulate energy levels, among many other essential functions. NAFLD occurs when abnormal levels of fat build up in the liver, and it affects one-in-four adults worldwide [1]. 
Rising rates of obesity around the world are projected to make NAFLD even more common in the coming years [2]. Other conditions linked to an increased risk of NAFLD include type 2 diabetes, cardiovascular disease, and high blood pressure. Ninety percent of people with two or more metabolic risk factors such as obesity, diabetes, and unhealthy levels of fats in the blood also have NAFLD [3]. The condition is becoming more prevalent in children and young adults [4]. NAFLD also occurs in approximately 10 percent of people who are not obese [5].

Arun J. Sanyal, MD, Director of the Stravitz-Sanyal Institute for Liver Health at Virginia Commonwealth University School of Medicine, noted that patients with NAFLD often don’t report any symptoms. He added that when symptoms are present, they are typically vague and non-specific, such as fatigue. 

“Fatty liver disease is a very chronic and largely silent disease as it progresses, so if you don't look for it, you won’t find it,” he says. “If you have risk factors for fatty liver disease like diabetes, obesity, et cetera – you have to look for fatty liver disease.”

Villiotti struggled with diabetes and obesity, but saw his general practitioner regularly to monitor these conditions. He was told to lose weight, adopt a healthier diet, and to exercise, but he had heard similar advice throughout much of his adult life. His physician mentioned his elevated liver enzymes but didn’t fully explain the implications of these results. By the time he was sent to a liver specialist, it was discovered that his NAFLD had indeed progressed to NASH and cirrhosis – meaning that he had irreversible damage to the liver. 

“Nine years elapsed between the time I was diagnosed with a fatty liver and the day I was told I probably had cirrhosis,” he says. “I had 18 doctor visits during that time period, and I never knew I was at risk for cirrhosis until that 18th visit.” Dr. Sanyal says that stories like Villiotti’s are all too common. Physicians often dismiss elevated levels of liver enzymes or fail to warn patients about the potential consequences of NAFLD. 

"I cannot even begin to tell you how often we see patients who’ve been told, ‘you have a little elevation of liver enzymes, (but) don't worry about it,’” he says. “When the patient eventually is diagnosed with cirrhosis and they come to us and we look back at their records, we see that for 10 years the person's liver enzymes have been elevated and nobody’s ever talked to them about it. This happens again and again and again.”

Villiotti was placed on a transplant waiting list after being diagnosed with liver cancer. While he waited, he suffered complications that sent him to the emergency department five times, including a harrowing incident when his liver function became so impaired that toxins began to reach his brain, affecting his speech and memory. 

One year and one day after being diagnosed with cancer, Villiotti received a donor liver. He emphasizes that he knows how lucky he is. There is a severe shortage of available organs for transplantation, and many patients die while on a waiting list or become too medically fragile to tolerate a transplant [6]. The rising prevalence of NASH threatens to make an already dire situation worse. “My life had been saved by an unselfish act of someone who donated their liver, and that allowed me to live,” Villiotti says. “I felt I had an obligation to pay that forward and to stop others in my situation from following in my footsteps.” 

In 2018, Villiotti founded a non-profit organization known as NASH kNOWledge to increase public awareness and provide education about NAFLD and NASH. He urges people to be aware of their risk factors and to initiate conversations with their physicians about tests that can help diagnose or monitor the silent and often-overlooked conditions. “Early awareness is really a key to battling this disease,” he says. “It can be reversed, but by the time I was diagnosed it was too late.”

• Non-alcoholic fatty liver disease (NAFLD) is a condition in which excess fat, not caused by heavy alcohol use, is stored in the liver.
• In 20 – 30% of cases, NAFLD progresses to a condition known as non-alcoholic steatohepatitis (NASH) that can lead to liver scarring (fibrosis). In more severe cases, NASH can lead to cirrhosis and liver cancer [7]. 
• The annual cost burden of NAFLD is $103 billion in the United States and a combined €35 billion in Germany, France, Italy, and the UK [8].
• Researchers predict a 178% increase in deaths related to NAFLD by 2030 [9].
• Weight loss and lifestyle changes can help slow the progression of or even reverse NASH.