Autoimmune Liver Disease

My work on autoimmune liver disease, specifically PBC (Primary Biliary Cholangitis) and liver transplantation, arose from conversations with Dr. Ellen Sogolow, who was a research scientist at the CDC when she was diagnosed as having stage 4 PBC and then on a waiting list for a transplant.

According to the Mayo Clinic, “Primary biliary cholangitis, previously called primary biliary cirrhosis, is a chronic disease in which the bile ducts in your liver are slowly destroyed…When the bile ducts are damaged, bile can back up in your liver and sometimes lead to irreversible scarring of liver tissue (cirrhosis).

“Primary biliary cholangitis is considered an autoimmune disease, which means your body’s immune system is mistakenly attacking healthy cells and tissue. Researchers think a combination of genetic and environmental factors triggers the disease. It usually develops slowly. Medication can slow liver damage, especially if treatment begins early.”

PBC is found primarily in women, mostly in their middle years. Difficulty in diagnosis results from a combination of ambiguous symptoms, lack of understanding of the disease, and stereotypes about middle-aged women (many women with PBC have been told that their symptoms are normal for menopause).

Ellen, a friend since college, and I were very much concerned about the personal dimensions of this disease but also had many social science questions that led us to study the experiences of people with PBC. We are very grateful to the organization pbcers.org, which provides invaluable information and support and which allowed us to carry out research with its members. We are also grateful to Lehigh University for research funds that helped to make the research possible. And it’s wonderful to note that Ellen is now post-transplant and doing well.

The following is a list of papers that emerged from this research.

Uncertainty and Liver Transplantation

Stigma and Liver Disease

Impact of Biopsychosocial Factors on QOL

Fatigue as a Major Predictor of Quality of Life

For Better and For Worse: Family and Friends’ Responses to Chronic Liver Disease

The Role of an Online Community for People With a Rare Disease: Content Analysis of Messages Posted on a Primary Biliary Cirrhosis Mailinglist