Faces of Liver Disease

I AM THE FACE OF AUTOIMMUNE HEPATITIS
MACKENZIE MANNO

When I was four years old, I was diagnosed with Autoimmune Hepatitis, a potentially life-threatening disease in which the body’s own immune system attacks the liver and causes it to become inflamed. If untreated, it can lead to cirrhosis and liver failure.

Before being diagnosed, my tummy hurt, I was lethargic and wondered what was wrong with me. I wasn’t playing like other kids my age; I just didn’t have the energy. Now I’m on medication that helps control my disease and I have lots more energy! I love to sing, dance, and play T-ball as well as play with my dog and my little brother!

I AM THE FACE OF HEPATITIS C
BETTY DUFOUR

In 2000, I was diagnosed with Hepatitis C (HCV), the most common chronic blood borne infection in the United States. HCV causes the liver to become inflamed, which can lead to cirrhosis (scarring), liver cancer and liver failure. I found out that my ex-husband was dying from Hepatitis C, so I started doing research, learned the risk factors for HCV and the ways it could be contracted. I was concerned and made an appointment with my doctor, got tested and was found to be positive.

I was devastated and also frightened because my ex-husband was dying. I sought out help immediately through the American Liver Foundation and found an HCV support group. I was encouraged after meeting people who were living with HCV and it gave me hope. Because I had the beginning stages of cirrhosis, my doctor recommended I start treatment immediately. Treatment was difficult, but I got through it with support from family, friends and ALF. I currently volunteer as a member of ALF Greater New York’s Speakers’ Bureau. I spread the word about the prevalence and dangers of HCV, give a voice to those affected, raise awareness, and encourage others who may be at risk to stand up and fight HCV!

I AM THE FACE OF WILSONS DISEASE
KRISTA LESINSKI

At 23, I was diagnosed with Wilson’s Disease, an inherited condition that causes the body to retain excess copper. The liver does not release copper into bile as it should and copper builds up in the liver, damaging the organ. After enough damage, the liver releases copper directly into the bloodstream which leads to damage in the kidneys, brain and eyes and without treatment can be fatal. Before being diagnosed, I had a lot of headaches, my feet and legs were swollen and my face would break out in rashes. Usually motivated to exercise and be active, I couldn’t find the energy to do anything. I was so sick that I found it hard to move. I knew something wasn’t right so I had my friend drive me to the hospital. Almost immediately, I was admitted and moved up to the ICU.

No one could figure out what was wrong until hours after being admitted. I was given 48 hours to live if I didn’t get a transplant and was in and out of consciousness. Luckily, a liver became available and after the transplant surgery I spent four weeks in the hospital before starting physical therapy. I weighed only 60 pounds and had to build up my muscles, learn to use my hands and to walk again. I tried to always have a positive attitude which played a huge part in my recovery. I’ve never felt better in my entire life and am so grateful to my donor and her family. I spend my time spreading the word about the importance of organ donation and am going back to school to pursue a career in the health field. Life couldn’t be better!

I AM THE FACE OF BILIARY ATRESIA
ZION HUNTER

When I was one month old, I was diagnosed with Biliary Atresia, a disease of the bile ducts that affects only infants. The bile ducts, which carry bile from the liver to the small intestine, become inflamed and blocked soon after birth. This causes bile to remain in the liver where it starts to destroy liver cells rapidly, causing scarring. Soon after I was diagnosed, I had an operation called the Kasai procedure, which replaced my damaged bile ducts with a length of my small intestine. Although this procedure is often successful, unfortunately it didn’t work for me; I needed a new liver. After a lot of tests, I was put on the Transplant Waiting List and was lucky enough to receive a new liver when I was 11 months old.

Before my transplant I was uncomfortable, constantly scratching my skin until it bled, I was lethargic and in pain. Now after the transplant my skin doesn’t itch any more, I’m not in pain and my parents have noticed an immediate improvement in my energy level and I am learning to run around and play with my five brothers and sisters. A whole new world has opened up for me and I want to learn and explore more every day!

I AM THE FACE OF CIRRHOSIS AND LIVER TRANSPLANT
LESLIE GORDON

When I was diagnosed with cirrhosis of the liver, I was devastated. I was given one to two years to live and was told I needed a liver transplant. I met my amazing transplant team and started a long year of testing, treatment and hospital stays before being placed on the transplant list. Waiting was the toughest thing. I didn't have much time and I certainly didn't have time to feel sorry for myself. I took a deep breath, said a prayer and found humor in just about everything I could. The doctors told me that it was my positive attitude and sense of humor that kept me going.

The day the call came I didn't believe it and thought I was dreaming – my doctors had a liver and it was a match! On October 15, 2004, I received my precious gift of life. I'm now healthier than ever! I pray for my donor and her family every day and will be forever thankful for my new lease on life. In my spare time I volunteer for the American Liver Foundation and have learned not to take life for granted - I live!

Page updated: January 29th, 2009