Linda Villanova is driven to manage her rare and incurable disease – Primary Biliary Cholangitis (PBC) – that is four times more prevalent in women and is the number one reason for liver transplants among women in Canada. She is an advocate for other women to learn about the disease, and to remind women that they can live well with PBC.
PBC is a rare, chronic autoimmune liver disease that is most frequently diagnosed in women 40 to 64 years of age. It is characterized by the destruction of the bile ducts that transport bile acid out of the liver. The progress of the disease results in harmful accumulation of bile acid that causes severe liver damage, ultimately resulting in cirrhosis (scarring of the liver) and, in many cases, the need for liver transplantation. In Canada, it is estimated that 11,000 people are living with PBC.
“I could have let PBC control me, but I was determined to manage and control it”
by Linda Villanova
I was a 54-year-old married mother of a teenage daughter, when I was first diagnosed with PBC in 2015. Prior to my diagnosis, I had a reoccurring cold not helped by 2 rounds of antibiotics, debilitating fatigue, and I experienced a brain fog that affected my ability to think quickly and converse easily. My symptoms were impacting my job as a bank manager – I’d be in meetings and would completely “zone out” on the conversation taking place. That frightened me.
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After blood work, I was referred to a hepatologist who diagnosed me with PBC and moderate liver damage. That diagnosis caught me totally off guard – I thought what did I do wrong, how did I get this? I was assured it’s caused by a genetic predisposition triggered by an unknown environmental factor – nothing I did. When you hear “incurable”, your mind goes right to your family, your child, your mortality – that takes up an incredible amount of space in your head.
I started an initial treatment right away with the only medication available to treat this disease, and my liver enzymes did improve, but were still a lot higher than normal. My brain fog improved, but I still experienced fatigue and the damage to my liver progressed.
My hepatologist referred me to a PBC specialist at the Liver Clinic at Toronto General Hospital and we discussed options. In August 2017, we decided I would begin a new treatment just approved in Canada. Today, by optimizing my therapy and working with my healthcare team to manage all aspects of my disease, my liver tests have improved, and the progression of my liver disease has slowed. My fatigue is significantly reduced and the brain fog is gone.
Today, my disease is well managed, and this has given me more confidence and control over my disease. I now have hope, and the belief that I can avoid a liver transplant. So, I’m living life and planning a vacation to Italy this year.
I’ve learned that the symptoms of PBC can be wide ranging and associated with other illnesses, and that some people experience no symptoms until they reach late-stage liver disease. Men do get this disease, but because it is more prevalent in women, we need to be a bit more aware of the risks and symptoms of PBC. Early identification is critical before liver damage progresses.
If you have PBC, start getting information and be your own advocate.
Go the Canadian PBC Society website (www.pbc-society.ca), and there are many PBC social media groups – you don’t have to feel alone. PBC is a chronic condition and you have to adapt to it and work with it. But the good news is that you can manage your disease and live well with PBC.