Meet Melissa Sanchez – a dedicated volunteer and passionate advocate for the American Liver Foundation (ALF). Melissa said, “I advocate in memory of my grandmother, Aira Sanchez, who bravely battled end stage liver disease from 2012-2014. I witnessed her fearlessly fight until her last breath and I want to use her story to educate others about liver disease and its devastating, sometimes generational effects.”

Like many Americans, Melissa’s grandmother was unaware she had liver disease. Melissa said, “My great grandmother passed away from end stage liver disease but the cause was unknown. My grandmother led a healthy lifestyle. She was a career nurse so she was very in tune with her health. She worked well into her 70’s so when she began feeling fatigued all the time, I assumed it was due to her age and workload. It wasn’t until she began spending her days off asleep in bed that I realized something was seriously wrong.”

Many people with liver disease do not look or feel sick even though damage is happening to their liver. At a certain point in the progression of liver disease, damage can become irreversible and lead to liver failure, liver cancer, or death. Melissa continued, “After getting the runaround from her primary care physician, we were referred to a liver specialist based on her family history. After still not getting the answers we needed, we set off for a second opinion and almost immediately after reviewing her records, doctors diagnosed my grandmother with end stage liver disease – just like her mother – and gave her six months to live.”

Early diagnosis may prevent damage from occurring in your liver. Your liver is an incredible organ. If you’re diagnosed when some scar tissue has already formed, your liver can repair and even regenerate itself. Because of this, damage from liver disease can often be reversed with a well-managed treatment plan.

Melissa said, “We were all devastated. My sister and I helped my grandfather rearrange the house so she could live the remainder of her life at home. We also took turns helping to care for her but over the next several months her condition worsened. She developed ascites and experienced episodes of severe hepatic encephalopathy. She was unable to walk, talk or swallow and ultimately fell into a coma. I kept asking her doctors if there could be any link between both my great-grandmother and grandmother having liver disease or whether there was any genetic testing available to determine the cause but they assured me there was nothing to be concerned about and that both incidents were isolated. We celebrated her 80^th birthday and a week later the good Lord called her home.”

Three Generations of Liver Disease

Melissa said, “My grandmother’s passing was incredibly difficult and we were left with so many unanswered questions – questions that quickly resurfaced when my mother, Wanda, was diagnosed with liver disease in 2021.

While rare, there are several liver diseases like Hemochromatosis or Gilbert Syndrome, that can be passed down from generation to generation. Melissa said, “We only found out because my mom suffered a severe allergic reaction to a medication she was taking for rheumatoid arthritis. She spent two months fighting for her life in a coma, on a ventilator. By the grace of God, one of her pulmonologists attempted to wean her off the ventilator – which was successful! From there, I took over her care and was determined to get out of the hospital. I advocated for her to be in the best rehabilitation center and I made sure to find her the best team of medical specialists in the area. Unfortunately, after intense diagnostic testing, her pulmonologist discovered she, too, had liver disease. He began asking her questions like, “What age did your hair turn white? Your mother’s, grandmother’s?” He then explained there is link between certain types of autoimmune liver diseases and short telomere syndromes (STS) or inherited gene mutations that cause accelerated deterioration or aging in parts of the body where cells actively divide, such as bone marrow, skin and the tissues lining the lungs and digestive tract. We tested my mother for STS and sure enough, she was a carrier of the gene! Finally, an explanation for three generations of liver disease!”

Melissa continued, “Whether you support ALF by donating, starting a Liver Live Walk team or advocating for legislative change, it is tremendously rewarding to be a part of such a wonderful organization. My goal is to help increase funding for liver research, therefore leading to advancements in treatment, and ultimately finding a cure for liver disease. My grandmother was an outstanding example of resilience and perseverance. I carry her strength within me and it has been influential in my legislative initiatives. It is my motivation to advocate for all patients suffering from liver disease and I pray others are inspired to join our fight and support ALF.

April 16-22, 2023 is Volunteer Appreciation Week. Melissa’s dedication to ALF’s advocacy program is driving change in Congress. Sharing stories like Melissa’s is the only way we will be able to break down barriers, connect more Americans to proper education, resources and care and advance research and therapies for the treatment and cure of liver disease. To learn more about how you can get involved, please visit our website.