Finding Answers in a Family Affected by Liver Disease

Rebecca Randall, who attended the Global Liver Institutes’s 2025 Advanced Advocacy Academy (A3) in Washington, D.C., never imagined she would be facing liver disease. She had always tried to eat well, maintain a healthy weight and avoid the risk factors she thought were linked to liver problems. Her perspective changed when her brother was diagnosed with liver disease. Despite hoping it would never affect her, she watched him struggle, unable to get a transplant and pass away shortly after Christmas.

A few months later, Rebecca’s own doctor noticed abnormal liver tests. When her liver counts stayed high, she feared the worst. Although her doctor acknowledged she didn’t know much about liver disease, she referred Rebecca to a specialist. Rebecca’s fears grew after being diagnosed with later-stage fibrosis. Determined to learn everything she could, she researched extensively and found evidence that losing weight — even as someone with a normal body weight — could improve her condition. By losing 15% of her weight, she was able to bring her fibrosis to a lower stage.

But her family’s challenges were far from over. Her sister, who seemed the healthiest of all, developed end-stage cirrhosis. Soon after, another brother was diagnosed, making four siblings in one family with liver disease. The shock was overwhelming, and Rebecca found herself grieving, caring for her sister and managing her own health — all while trying to understand how this could happen.

Searching for answers, Rebecca connected with the liver community through surveys and online resources. Though hesitant at first, she eventually attended a liver meeting in San Diego, where she discovered thousands of others facing similar struggles. Those connections reinforced her belief that her family’s condition is genetic and fueled her drive to keep learning and advocating. Her urgency deepened when, in July, her youngest daughter was also diagnosed.

Rebecca hopes her story helps raise awareness of liver disease, especially among primary care doctors. She stresses the need for early screening and advocates for more genetic research, particularly into conditions like alpha-1 antitrypsin deficiency (AATD), which her family carries.

Rebecca’s mission is clear: to find answers for her family and to help others navigating the uncertainty of liver disease.