It’s November National Family Caregiver Month.
Award-winning actress Bellamy Young is known for playing strong characters on TV shows like “The Other Black Girl” and “Scandal” (hello, Mrs. Chairman!).
These days she also uses the power of her voice and her personal experience to raise awareness of a serious condition called hepatic encephalopathy (HE) which can cause brain damage in people with liver problems. Young’s father was diagnosed with overt HE when she was a teenager.
“My dad’s journey with overt hepatic encephalopathy started with one cirrhosis diagnosis. That diagnosis came from the fact that he was a heavy drinker,” he said. “The diagnosis came with a lot of shame and stigma – our family took it on the chin and went home and quietly agreed never to talk about it again.”
HE develops when your liver fails to filter toxins in your blood. The toxins then build up and damage the brain which can cause memory loss, slurred speech, coma and even death.
Young and her family had no idea her father’s liver disease could cause HE and affect his brain. “They didn’t tell us much about anything we could do about it and they certainly didn’t tell us what might be down the road for us or what to watch out for,” Young said. Symptoms of HE can include involuntary movements, balance problems, a musty smell, and dramatic personality changes — all of which happened to Young’s father. “When your brain is muddied by the toxins that build up in your blood and body, you become a different person,” he said.
Anyone with liver disease can develop HE, but you can prevent it from causing permanent brain damage if you catch it early — something Young wishes she’d known then, and why she’s so passionate about spreading HE awareness today. We spoke to Young about her experience and how she uses social media to give HE carers a voice.
This interview has been lightly edited for clarity and length.
Healthy Women: Looking back, what signs of hepatic encephalopathy (HE) did you notice in your father?
Bellamy Young: We lived with this diagnosis [cirrhosis of the liver] which we thought was an end point, but my father kept changing. I was a teenager and I was my worst self, and I just thought he was drinking during the day, that’s why he didn’t pick me up from school, or that’s why he started smelling funny. But one night, he couldn’t find his way home from work—the building he’d worked in for 23 years—and that’s what made us go back to the doctor because we thought there must be something else going on.
That’s when they said it’s obvious hepatic encephalopathy and that it’s the progression of his liver disease. My mom and I were like “What?” Because we had no idea this was even a possibility. We felt awful, like we could have helped him — we could have gotten him back sooner if we’d known we were seeing changes. Choices were very limited back then. We didn’t have much time with him after the diagnosis.
Healthy Women: What inspired you to be open about your experience today and want to raise awareness about HE?
Bellamy Young: Learning that so much has changed. I had no idea because this is not something I hear people talk about. I had no idea that treatment options have advanced and that communities are emerging – and once I found out I was so honored to join the conversation.
Today, I’m so grateful to be able to talk about this because I never want anyone else to feel ashamed or alone, and there is so much to learn and so much information and so many more options. And I found talking about that — people are so relieved to have these conversations because they’ve felt so isolated and scared and it’s just when we come together as a community and help each other — first and foremost — knowing that we’re not alone and Then, also sharing our knowledge and sharing and strategizing about how to talk to doctors and or how to care for our loved ones has been such a blessing.
Healthy Women: Tell us a little bit about the HE carer conversations you’ll be sharing on your Instagram.
Bellamy Young: It’s just about sharing stories and being seen and heard. The act of learning and coming together was so powerful because — especially when you’re trying to take care of someone you love — so often you forget to take care of yourself, and your well runs dry and there’s nothing left to give. And so, reminding ourselves that our greatest strength comes from a full well—or as close as we can find—and asking for help when we need it and giving help when we have the strength without waiting for it to be asked.
Healthy Women: What advice do you have or what have you learned that you want to share with HE carers?
Bellamy Young: A great thing to do is make sure you know what to look for. If you know someone you love has been diagnosed with any type of liver disease, just know that it’s a journey — you’re not at your destination. Educate yourself about what other symptoms might be, what the progression might be, what might be on your horizon. It might not happen, but just knowing what to look for will help you catch any changes as soon as they happen.
And then I really think the other pillar is community because you can’t do it alone. We always think we have to do it alone, especially if it’s our parents or our spouse or our child — we feel such a responsibility that it’s ours alone, but it takes a village to keep someone and it also takes help to keep your own engine full of fuel. I’ve often had this conversation with myself – I have to think of self-care like it’s not icing on the cake – it’s an absolute necessity.
You can follow Bellamy Young @bellamyyoung.
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