What it’s Like Living with PBC

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

Over the last decade the number of health clubs, gyms, and other fitness centers has been on the rise. The idea of getting fit and being healthy has never been more trendy and it’s a trend I think we can all get behind. Working out naturally lowers your risk for a number of diseases and lengthens your life expectancy. Unfortunately, 1 in 1,000 women over the age of 40 are still going to be diagnosed with PBC, also known as primary biliary cholangitis. Because there is nothing that can prevent you from being diagnosed with PBC, formerly known as primary biliary cirrhosis. Not diet. Not exercise. Not anything. PBC is a rare and progressive liver disease that primarily results from autoimmune destruction of the bile ducts that transport bile acids out of the liver, resulting in cholestasis. It’s more commonly a disease affecting woman, with 90% of people with PBC being women.

Meet Nishele, a wife, mother and educator diagnosed with PBC in 2013.  As an educator at the university level she treats her disease with medication, a healthy lifestyle and by reading everything she can. Nishele finds it helpful and comforting to stay up-to-date on all the latest research that is being done on PBC and often shares the information with her mother, who was diagnosed with the disease just a year after Nishele was. Unfortunately, there doesn’t seem to be enough information about PBC for those suffering or the medical professionals treating them.  According to a survey, more than 1/3 of those living with the disease think that current PBC information available is fair or poor which is unsurprising when you consider 66% of doctors think there is not enough information about PBC published in medical journals and presented at medical conferences.

“I think you just have to be determined and just be proactive about it….[I] consistently research as much information as I can and try to find the answers….I think the knowledge is power.”

— Nishele

The disease can appear in people younger than 25 years of age, but most people are diagnosed between 35 and 60 years of age. Since 1988, PBC has been the second-leading overall cause of liver transplant in women in the United States, behind hepatitis C. As with any disease it’s so important to manage the disease and symptoms in order to prevent serious health issues and the possible need for liver transplant. Which is where leading a healthy lifestyle can have a positive impact. You can find more information on the condition and hear more from those living with the condition at LivingwithPBC.com.