"My dad's overt hepatic encephalopathy was born out of his drinking, and his initial diagnosis was cirrhosis," Young, who has partnered with Salix Pharmaceuticals to help promote an FDA-approved medication to reduce the risk of OHE recurrence, tells Parade. "Drinking was always a part of my childhood. Once we got the cirrhosis diagnosis, we were very ashamed of it—we came home, closed the door and didn't talk about it. And we had no idea that a disease that could affect his liver could eventually affect his brain, his proprioception and his personality."
Eventually, Young says, she and her mother started to see a "very different dad," which is what tipped them off to something going on beyond cirrhosis. "Now I can look back and separate the man from the disease, but then I was young and I didn't know what was happening," she remembers.
Below, Young shares the details of the journey to her father's OHE diagnosis, how she felt when they finally got answers and the truth about her caregiving journey.?SIGN UP for Parade’s health newsletter with expert-approved tips, healthy eats, exercises, news & more to help you stay healthy & feel your best self?
Young with her parents after her seventh grade play.Bellamy Young
The Journey to a Diagnosis
One night, her dad couldn't find his way home from work, despite having worked in the same office location for decades. This is what finally got Young and her mother to seek help. "When we went back to the doctor, they said this is now overt hepatic encephalopathy. At that point, it was very, very progressed."
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"I'm so grateful to have partnered with Salix to start talking about these things, because this happens to so many people and no one's talking about it," she explains. "My mom and I had no idea that liver disease could be chronic and progressive—we didn't know we could go into a different chapter of his disease process."
Bellamy Young's father in front of his first house.Bellamy Young
Young emphasizes that today, there are so many more treatment options than there used to be: "I talk about it, even though it makes me sad, so that nobody else feels alone—and so that anyone whose loved one is diagnosed with a chronic and progressive liver disease knows this is something that might happen, and can catch it early."
She also felt a lot of guilt. "I felt so guilty—guilty for not being a partner to him on this journey, for not having known to look out for something," she says. "It's hard to notice incremental changes in the people we love because we're around them all the time. It was just the darkest day."
Stepping Into a Caregiving Role
Young shares that because she became her father's caregiver as a teenager, she was her "worst human self." "I wasn't happy to do it. I was really miserable," she admits. "I didn't have people over. There was a hospital bed in the living room. As a teenager, that's so embarrassing."
Her experience as a caregiver is another reason why Young has so much gratitude for her partnership with Salix, which also provides caregiving resources. "I don't want anyone else to feel this way; I don't want them to walk the same path. I want everybody to know they're not alone, that there's so much information and so many treatment options now, to find their community, to always check in with themselves and rely on people. People want to show up for you more than you realize."
Why Her Role on Brilliant Minds ‘Hits Different'
"I've been a huge fan of Oliver Sacks my whole life, so it was incredible to get the chance to work on a show built around his character. But what meant the most to me—especially through the lens of everything I went through with my dad—is that Oliver Sacks never gave up on anybody," she says. "He was always interested in the story. He saw the person, not the disease, and treated each patient with respect and utter attention. I think if we all walk through life with utter attention for whoever we're with, only love can come from that. Getting to do that series really meant a lot to me."
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