How Much Do You Know About Primary Biliary Cirrhosis (PBC)

I can’t imagine visiting for routine liver testing and it coming back abnormal. I can’t imagine wondering what is wrong with me while a doctor goes through a list of common issues often associated with my results and eventually being diagnosed with something I have never heard of like primary biliary cirrhosis (PBC). Sadly, many diagnosed with PBC have to wait a bit because PBC is not always that easy to diagnose. In many cases, it can take a while to diagnose patients for PBC due to it being such a rare disease many doctors may not check for it until they have ruled out other more common conditions.

PBC is more commonly found in women (about 90% of those living with PBC are women) and currently affecting about 1 in 1,000 women who are over the age of 40. Most of those diagnosed with PBC are between the ages of 35 and 60, but PBC has appeared in people younger than 25 years old. PBC has been the second leading overall cause of liver transplant in women in America, behind hepatitis C, since 1988.

My mom was recently diagnosed with PBC and it’s a scary situation to find yourself or a loved one in. I think hearing the actual diagnosis and not having a clue what is was for me was by far the scariest part. When a loved one is diagnosed with PBC, which is something you’ve never heard of your mind tends to go to the worst place possible, but you try and keep your head up because you don’t want to seem too worried. It’s difficult, but with one another we made it through it and were able to help mom keep her head up while we learned more about the disease and began talking to doctors.

Is there anything one can do to avoid getting PBC?

First off I think it’s important to note that PBC is not contagious so you can’t get or give PBC to family and friends. The exact cause of PBC is currently unknown; however, it is known that PBC is not caused by drinking alcohol. Scientists think it may be inherited, and that environmental factors such as exposure to cigarette smoke and other chemicals might cause PBC. PBC is a progressive disease, meaning it can get worse over time.

What symptoms are associated with PBC?

You may think those diagnosed showed some symptoms of PBC but in most cases people did not have any symptoms when they were diagnosed. Those who have reported having symptoms reported fatigue and itching. People often find out they have PBC because of routine liver testing which is how my mom found out she had PBC.

Routine testing is often a way to make sure the liver is functioning properly. Many people who get diagnosed with PBC find out when a liver test comes back abnormal. In blood tests used to diagnose PBC, doctors often look for ALP levels which are an enzyme found in the body and abnormally, high levels of ALP can be a sign of liver damage which is often in the early stages of PBC and AMAs, which are proteins made by our immune system. The presence of AMAs is a sign of PBC.

There are three phases to PBC which are:

• Early Phase – There is usually not any symptoms during the early stages, there is very little liver damage, test results often show normal liver function, but there may be AMA present.
• Moderate Phase – If one gets a liver test the results will likely be abnormal, there will probably be AMAs, increased ALP, and fibrosis and cholestasis in the liver might be getting worse. One might notice symptoms like fatigue and itching, but it’s important to note that symptoms are not necessarily related to a particular stage of the disease. There have even been some people who have noticed their symptoms decrease as their liver becomes more and more damaged.
• Advanced Phase – When at this stage it is common for ALP levels in the increase, symptoms of cirrhosis may appear, bilirubin is elevated and fibrosis turns into cirrhosis along with other complications can start to appear.

My mom is doing great, her spirits are high, she looks and feel good. She can work full-time, be a mom (Just because we are all out of the house doesn’t mean her job stops) and the best grandma my kids could ask for. Of course, she has had to adopt a new, healthier way of living but it’s been good for all of us because it’s something my sister and I jumped on board with to help support our mom.

To learn more about the phases of PBC, you can visit LivingWithPBC.org.

Is There a Cure for PBC?

PBC affects people differently, there is currently medication to help manage PBC, but there is not currently a cure for the disease. Like most diseases early detection may help one to manage the disease better. You can learn more about the treatment for PBC by visiting LivingWithPBC.com.

Take a moment and meet Nishele, Diana, Wendy, Susan, and Sharon at LivingWithPBC.com. They share their unique story to help shed light on what it’s like to be diagnosed with PBC.

Today’s post is a part of the Insider’s Program on Bloggy Moms. All opinions are my own.