- “Scandal” star Bellamy Young is working to raise awareness of hepatic encephalopathy.
- Her father passed away shortly after being diagnosed with the disease when she was only 15 years old.
- Hepatic encephalopathy is a complication that can occur in people who are living with cirrhosis.
- The condition occurs when a person’s liver fails to filter out toxins properly, which can accumulate in the bloodstream, ultimately impairing brain function.
Actor Bellamy Young can vividly recall when her late father’s health started to take a noticeable turn for the worse.
“He was an auditor, and at a certain point, the numbers stopped making sense to him, which, numbers were like air to him, his whole world, and we were like, ‘Woah,'” she said. “Then, [he started showing signs of] anger, and he was also not ‘that guy.'”
However, Young says her family’s concern reached new heights when, one day, her father couldn’t find his way home from the office building where he’d worked for over 25 years.
Young’s dad had already been living with cirrhosis, marked by severe liver scarring, for some time, but they had no idea his condition could also affect his brain.
Her father was ultimately diagnosed with overt hepatic encephalopathy, or HE, which involves a decline in a person’s brain function, fueled by the presence of severe liver disease.
He was 53 years old when he received his diagnosis and passed away two years later.
Today, Young — whom many people know from her role as First Lady Mellie Grant in the hit TV series “Scandal” — is using her platform to help spread awareness about hepatic encephalopathy.
She partnered with Salix Pharmaceuticals on UnderstandingHE.com, so that more people can have the information that she and her family didn’t at the time of her dad’s diagnosis.
She hopes sharing her story will help others who are living with cirrhosis and HE, as well as their families and caregivers.
Young said that it’s still jarring to think about how little her family knew about her dad’s health at the time.
“We couldn’t have fathomed to correlate [these cognitive changes with] a diagnosis of a disease in his liver,” she said. “It was really scary and confusing, and we felt so alone. So much has changed now.”
However, Sammy Saab, MD, AGAF, MPH, a professor in the Departments of Medicine and Surgery at the David Geffen School of Medicine at UCLA, said hepatic encephalopathy is difficult to diagnose because it can often resemble other conditions.
“Unfortunately, when you get cirrhosis, a number of complications occur, and an important complication is hepatic encephalopathy. The numbers vary depending on how you define hepatic encephalopathy because hepatic encephalopathy is a spectrum of mental confusion, and it can occur depending on severe liver disease from 25-80% of people with cirrhosis,” Saab explained.
“We have a hard time diagnosing it. There’s not a specific blood test that says you might have hepatic encephalopathy,” he added.
For example, he mentioned a patient he worked with once who came in thinking they might have dementia or hepatitis C, but in reality, it was hepatic encephalopathy.
The condition occurs when a person’s liver fails to filter out toxins properly. These materials will accumulate in the bloodstream, ultimately impairing brain function.
This can manifest in symptoms like disorientation, mood changes, confusion, and anxiety, among others.
The American Liver Foundation reports that about 70% of people with cirrhosis will develop this degenerative condition. It’s a serious problem that is growing in prevalence.
Young said it’s “shocking” to see statistics show mortality rates have doubled for people with severe chronic liver disease and cirrhosis in the past 15 years.
The Centers for Disease Control and Prevention (CDC)
When asked what accounts for these high numbers, especially in recent years, Saab said that experts believe it’s due to “the increasing burden of fatty liver” in our society.
Fatty liver is an important cause of cirrhosis, liver cancers, and liver failure.
Additionally, he said that he and his colleagues are seeing people coming into their offices with alcohol-associated liver disease more frequently and pointed to the high number of articles and surveys that point to alcohol-associated liver disease in people at increasingly younger ages.
Saab said the big barrier to treating hepatic encephalopathy is getting a diagnosis. Once that hurdle is crossed, a number of therapies exist.
He said there are two main FDA-approved medications. One is a syrup called lactulose, and another is an oral antibiotic called Rifaximin.
He said people might start on lactulose and then go on the other or may be treated with a combination of these two medications.
Saab noted that he is on the speaker bureau for Rifaximin.
Stigma remains a major barrier to the treatment and diagnosis of alcohol-associated liver disease, which can lead to HE.
In fact, some people who may be experiencing symptoms might not speak about them with a healthcare professional because they feel ashamed.
“Stigma is a major barrier to healthcare because patients, unfortunately, are embarrassed to discuss their alcohol use or alcohol disorder, and physicians also have a hard time asking those important questions. There has been a movement now to change the terminology of both alcohol and fatty liver so these can become less stigmatizing,” Saab explained.
“‘Fatty liver’ in particular, the name has been changed to metabolic dysfunction associated steatotic liver disease, for example….so, there has been a big movement to de-stigmatize these conditions in patients, because they are barriers and it does inhibit appropriate medical interventions,” Saab added.
Stigma can also hold back family members and those who have cared for people who are living with liver disease from sharing their stories and passing along vital information to others in need.
Young said she herself had “a lot of reticence and a lot of fear” about sharing this piece of her family’s story. Part of that is due to the fact that this isn’t just her story — it’s her father’s, it’s her mother’s, it’s their family’s.
However, she’s found that telling others has helped her heal as well.
“[I spent] a lot of decades since [my father’s death] sort of working through the regret that I have of ‘how I couldn’t help more,’ and ‘I didn’t know more,’ and I’ve come to some forgiveness for myself for not knowing more and some gentleness,” she said. “So, yeah, that is the other reason I’m so happy to get to talk about this now and shout it from the rooftops.”