Ally
A Hepatitis B Story
Place of Residence: Northern Virginia
Ally is a mom of three kids and spends her free time going to concerts. When she was born, she was exposed to hepatitis B and developed a chronic hepatitis B infection. Although her condition has remained stable, she explains how the virus has impacted her life and family.
Read Ally’s story below.
How would you describe yourself? What are some of your favorite things to do?
I’m originally from Syracuse, New York and the cold is where I love to be. I was born in the winter, so I always say that I started my life buried under six feet of snow. My husband and I have known each other since middle school, and we now have three children together. They’re all brilliant and keep us on our toes!
Our family has two big rescue dogs and I’m a grandparent of a kitten while my oldest child is away at college. I love live music, and in my spare time I’m always going to concerts. My oldest child is my concert buddy, and I love sharing that experience with my family and friends.
How did you first discover you had hepatitis B?
I was exposed to hepatitis B at birth, and my older siblings were as well. Our mother is from South Korea, and hepatitis B screenings weren’t routine for pregnant women during that time. I was born a few years before the universal birth dose of the hepatitis B vaccine was implemented, so I wasn’t protected at birth, and neither were my older siblings.
All of us now live with chronic hepatitis B. Although we each have elevated liver markers, the virus has been mostly dormant for us, which means that the virus isn’t actively causing illness. Our diagnosis requires yearly check-ups to monitor the disease, which can be difficult to keep up with as a busy, working mom. But so far, the virus has been stable for me.
I don’t remember when I was told I had hepatitis B, but my mother was a nurse and always had a matter-of-fact approach to medical things. Growing up, my hepatitis B status was just a part of me. At school, I was often called down to the nurse to be asked about the hepatitis B vaccine, the one vaccine my record was missing. I would try to tell them that I already had hepatitis B, and that it was too late for me.
To meet the school requirements, I ended up having to get the hepatitis B vaccine anyway. I remember secretly hoping the vaccine might somehow cure me. It didn’t, and there’s still no cure for hepatitis B. That’s why prevention is so important.
How has hepatitis B affected your life?
Even though I’ve gone my entire life without any issues from hepatitis B, the disease is a ticking time bomb. I never know what might trigger the virus, and I worry about medications I might need one day that could cause the virus to become active. I have psoriasis, an autoimmune condition that affects the skin, and the medications that treat the condition are long-term biologics that could affect my immune system and trigger the hepatitis B virus.
"There's still no cure for hepatitis B. That’s why prevention is so important."
Having hepatitis B hinders a lot in my life, particularly the decisions I make about my health. I’ve always been very cautious about lifestyle choices like my diet and drinking alcohol. I don’t want to be responsible for any damage to my liver, which can be affected by the virus.
My hepatitis B status was a big fear of mine when my husband and I decided to have children. I was worried about how it might affect them, and how pregnancy might affect me. All three of my children received the hepatitis B vaccine at birth, especially given my status. My two oldest children did not contract chronic hepatitis B, but my youngest child did. I remember being devastated when I got the news. I don’t want her to have to go through life with the same thoughts in the back of her mind.
After learning my youngest child had hepatitis B, I worried about taking her to her nanny’s. I knew there was a child in the group who was unvaccinated, and I had to make arrangements so they wouldn’t interact closely with each other. They were babies, so you never know what they might put in their mouth or come in contact with. I just wanted to keep them safe.
"The risks from getting the hepatitis B vaccine are so small compared to the risk of hepatitis B destroying your liver."
How has hepatitis B affected the rest of your family?
Now that my siblings and I are older, we talk more about hepatitis B and how it affects us. My brother is a year older than me, and I tend to look to him as my model of aging. If hepatitis B starts to activate for him, then perhaps I’m only a year behind; he’s like a sneak peek into my future. I worry about my siblings and my mom as we get older, because I don’t know when the virus might start causing problems. We live with a lot of uncertainty.
I have a younger sister who was born after the universal birth dose of the hepatitis B vaccine was implemented, so she received the vaccine and did not get hepatitis B from our mother. The vaccine protected her not only from the disease, but also from the worries the rest of our family lives with.
What do you want others to know about hepatitis B?
I want people to know that although hepatitis B has been dormant for me, many people with active hepatitis B experience serious health issues. I’ve had lectures from my gastroenterologist and medical team, and I know what the disease can turn into. Hepatitis B is largely preventable through vaccination, and it’s a simple way to protect yourself and loved ones.
Given the increase of vaccine hesitancy and false rumors online, I worry about being near people who are unprotected against hepatitis B. The thought of me being the cause of someone else getting this disease scares me. Even a small cut on my finger makes me concerned that I might transmit the virus to someone else.
Becoming a mom made me particularly grateful for vaccines. The question of vaccinating my kids at birth wasn’t even a question—it was “just do it.” There was no doubt in my mind because I don’t want them to live with this disease. The risks from getting the hepatitis B vaccine are so small compared to the risk of hepatitis B destroying your liver.
The hepatitis B virus is irreversible. There is nothing I can do about it now besides be careful, and if I could go back and get vaccinated at birth, I absolutely would.
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