Rebecca Johnston Headshot

City/State/Country: Springfield, Illinois, USA

Disease(s): Autoimmune Hepatitis (2002 – Present); Primary Sclerosing Cholangitis (2017 – Present)

“Have you noticed that your eyes are kind of yellow?”

My family members noticed it first, and soon enough, I was referred to a specialist after my lab results revealed that my liver enzymes were elevated. One year later, I was formally diagnosed with autoimmune hepatitis. For ten to fifteen years, I managed my liver disease through the help of two medications although the high dosage of medication at the start of my liver health journey made me feel absolutely miserable. Several years ago, I was hospitalized for two weeks due to a cholangitis attack, leading to a diagnosis of primary sclerosing cholangitis. Soon after, I was given a tumor marker test at the Mayo Clinic. This was the game changer: I learned of the possibility that my liver disease could progress to liver cancer. Although it was the doctors who informed me of this possibility, it really took some personal research to dive deeper into the breadth and depth of information. From articles and online forums to Facebook groups and mobile phone apps, I became more proactive in educating myself about liver disease. This was the start to my journey in advocacy.

A lot of times this battle with liver disease feels isolating, but connecting with others who understand what you’re going through across different Facebook groups is really comforting. I’ve also taken a more active role in these groups, over the years, by sharing my personal experience or the articles I’ve read — ultimately raising awareness of liver disease. It is important to me to spread the word about liver disease and to educate others as lack of awareness can have serious consequences. Stigma, for example, is hurtful – especially when it comes from medical professionals – but it stems from a lack of education. So, there is no time like the present to inform others that liver disease can happen to anybody, not just people who drink alcohol.

Although living with liver disease is physically and emotionally challenging, I have been able to live a normal life – traveling, snorkeling, having children. So, do not limit yourself and do not hold back from doing something because you are scared or you are worried about the “what ifs”. If you live your life with those limitations, you’ll have no life at all.