Bellamy Young Talks Caregiving and Hepatic Encephalopathy

November is National Family Caregivers Month.

Award-winning actress Bellamy Young is known for playing strong characters on television shows like “The Other Black Girl” and “Scandal” (hello, EM. President!).

He is also currently using the power of his voice and his personal experience to raise awareness about a serious disease called hepatic encephalopathy (HE) which can cause brain damage in people with liver problems. Young’s father was diagnosed with overt HD when she was a teenager.

“My father’s journey with overt hepatic encephalopathy began with a 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 seriously, went home and silently agreed to never talk about it again.”

HD develops when the liver fails to filter toxins from the blood. Toxins then build up and damage the brain, which can lead to memory loss, slurred speech, coma, and even death.

Young and his family had no idea that his father’s liver disease could cause HD and affect his brain. “They didn’t tell us much about what we could do about it, and they definitely didn’t tell us what might happen to us in the future or what we should watch out for,” Young said. Symptoms of HD can include involuntary movements, balance problems, musty odors, and dramatic personality changes — all things that happened to Young’s father. “When your brain is fuzzy from toxins building up in your bloodstream and body, you become a different person,” he said.

Anyone with liver disease can develop HD, but it can be prevented from causing permanent brain damage if caught early, something Young wishes he knew back then and why he is so passionate about raising awareness about HD today. We spoke to Young about her experience and how she uses social media to help give higher education caregivers 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?

Young Bellamy: We lived with this diagnosis. [cirrhosis of the liver] We thought that was an end point, but my dad kept changing. I was a teenager and I was my worst self, and I thought he had been drinking during the day and that’s why he didn’t pick me up from school or that’s why he started to smell funny. But one night, he couldn’t find his way home from work (the building he worked in for 23 years) and that’s what sent us back to the doctor because we thought something completely different must be going on.

That’s when they said it was overt hepatic encephalopathy and that it was the progression of his liver disease. My mom and I were like, “What?” Because we had no idea this was even a possibility. We feel very bad, as if we could have helped him; we could have recovered sooner if we had known we were noticing changes. Back then the options were very limited. We didn’t have much time with him after the diagnosis.

Healthy Women: What inspired you to talk openly about your current experience and want to raise awareness about SS?

Young Bellamy: Learn that so many things have changed. I had no idea because it’s not something I hear about. I had no idea that treatment options had progressed and communities were emerging, and once I found out, I felt very honored to participate in the conversation.

Today, I am so grateful to be able to talk about it because I don’t want anyone else to feel embarrassed or alone, and there is so much more to know, so much information, and so many more options. And I found that talking about it – people feel very relieved to have these conversations because they’ve felt very isolated and scared, and just when we come together as a community and help each other, first and foremost, knowing that we’re not alone and then , it has also been a great blessing to share our knowledge and share and strategize on how to talk to doctors or how to care for our loved ones.

Healthy Women: Tell us a little about the conversations with HE caregivers that you will share on your Instagram.

Young Bellamy: It is simply the sharing of stories and the act of being seen and heard. The act of learning and coming together has been very powerful because, especially when you are trying to care for someone you love, you often forget to care for yourself as well, the well runs dry and there is nothing left to give. And so, reminding ourselves that our greatest place of strength comes from a full well (or as close as we can get) and asking for help when we need it and giving help when we have the strength to do so, without waiting for it to arrive. be asked.

Healthy Women: What advice do you have or what have you learned that you want to share with higher education caregivers?

Young Bellamy: A great thing you can do is make sure you know what to look for. If you know that a loved one has been diagnosed with some type of liver disease, know that it is a journey: you are not at your destination. Educate yourself on what other symptoms might be, what the progression may look like, and what might be on your horizon. IT may not happen, but knowing what to look for will help you spot any changes as soon as they occur.

And then I really think the other pillar is the community because you can’t do it alone. We always think that we have to do it alone, especially if it is our parents, our spouse or our child; We feel that that responsibility is ours alone, but it takes a village to keep someone going and it also takes help to maintain your own engine. full of fuel. I’ve often had this conversation with myself: I have to think about self-care as if it’s not just the icing on the cake, it’s a firm necessity.

You can follow Bellamy Young @bellamyyoung.

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