Carolyn E.

Primary Biliary Cholangitis

I have lived with PBC since 1992 when I was 32. I was a young mother, I had two kids, my dad had recently died, and I had a bad cold that would just not clear up. I was so exhausted. Ultimately I was diagnosed with PBC.

In 2006, I received a living donor transplant and have just celebrated my 10th year post transplant! I feel that I have learned a lot that can help others, especially the newly diagnosed and their family members.

ALF provides so much support to people living with liver disease and valuable forums for patient education so I have been an active volunteer with ALF for over two years. In January, as part of its series of patient education webinars, I joined Dr. Cynthia Levy, a nationally-known hepatologist, to give people an opportunity online to ask the medical and personal questions that are keeping them awake at night. It was amazing. Hundreds of people logged on to hear what I had to say, and it was my honor to share my experiences with them.

Through ALF, I also meet with other PBC patients one on one to talk about living with the disease. For example, when I was first diagnosed, I was told that I would not be able to have another child. I didn’t feel my family was complete yet and I didn’t want to accept that. I was able to find doctors who could guide me to a healthy pregnancy, and today I have a wonderful son who has been healthy for more than 21 years.

So when I met with a woman who had been diagnosed with PBC and had also been told she would never be able to have children – I was able to give her renewed hope. I shared ALF resources about managing PBC, treatment protocols and child bearing and encouraged her to explore the options for pregnancy with her doctor.