Donate to Amanda’s PSC Fight Club

Today, February 28, 2023— aptly deemed “Rare Disease Day”— marks four years since Amanda Pugliese’s liver transplant. With her permission, we are sharing an update about Amanda’s medical journey and current condition, as she continues to fight for her life.

For those of you who don’t know, Amanda was diagnosed with a very rare liver disease in 2012 called Primary Sclerosing Cholangitis (PSC). PSC is an autoimmune disease, which attacks the bile ducts that transport digestive fluid from the liver to the small intestine. The disease causes the ducts to inflame, harden, narrow, and scar over time, which can eventually lead to liver failure. There is no known cure for PSC. It is a progressive and pervasive disease that affects the whole body, and the rate at which it progresses is unpredictable. Thus, treatments are largely geared towards managing related conditions, including Ulcerative Colitis; and easing symptoms, including severe jaundice, recurrent infections, debilitating itchiness, and extreme fatigue. Once the disease progresses to end-stage liver failure, or when the symptoms become intolerable, a liver transplant is the only option. This has been Amanda’s experience.

On February 28, 2019, Amanda was given a new lease on life when she received a partial liver transplant from a local friend and hero, Karin. Despite receiving the most selfless and gracious gift, Amanda’s recovery was wrought with complications. She spent months in the intensive care unit and underwent countless follow up procedures and surgeries. Amanda eventually recovered from her transplant; and with a new liver, she was able to resume life, return to work as a Special Education Teacher, and most importantly, give birth to the love of her life, Nolan, on Christmas Day, 2020.

Unfortunately, a liver transplant does not cure PSC. While some transplant recipients can resume their lives symptom-free for many years, Amanda has been dealt the most unfortunate hand. In early 2022, she began experiencing recurrent symptoms from the disease and was diagnosed with Recurrent Sclerosing Cholangitis (rPSC), which has progressed rapidly within the last year. As a result, Amanda has had to quit her job, undergo numerous, lengthy hospital admissions (including over 40 days between September and November, 2022), and live in a state of constant, debilitating discomfort.

Despite the mountain of adversity she has faced, and the long road ahead, Amanda remains strong and hopeful. She never complains or asks for help, and is focused on getting strong in hopes of undergoing a second liver transplant. In light of her many hospitalizations and procedures, which remain ongoing, Amanda has incurred thousands of dollars in uncovered medical bills. Further, her current condition necessitates full-time childcare and help with household chores, like routine cleaning, laundry, and meal prep.

We are reaching out on Amanda’s behalf because she deserves, and would really benefit from, an outpouring of love and support from the community.

If you would like to show your support in another way (sending a healthy meal, providing childcare, or simply offering some words of encouragement), please reach out to Katie, Laura, Lindsey or Lauren.

We hope that with the community rallying behind her, Amanda can continue to prioritize her health without any financial and/or emotional stress that could impede her progress.

Thank you