The Face Of Liver Disease

Think you know the face of liver disease?

Think again.

1 in 10 Americans are affected by liver disease.

Chances are, you know someone affected, and with over 100 types of liver disease, the face of liver disease could be anyone, regardless of age, gender or race.

Meet Tigerlily, a face of liver disease:

In July of 2000, Tigerlily entered the world.

For those of you who don’t know her, she is a punky, spunky, 12 year old. She is kind and generous, cheerful and giving. She sets an example to all around her of strength and perseverance.

Tigerlily was born with biliary atresia, a liver disease without a cure and a cause that is not fully understood. Surgery is performed as soon as the disease is diagnosed in order to slow the progression of liver failure. This surgery helps many children live longer before needing a liver transplant. Although Tigerlily’s surgery was successful for a while, the disease progressed and -- at only 15 months old -- Tigerlily required a liver transplant in order to survive.

That first year of her life was full of ups and downs and many hospitalizations.

Tigerlily’s mother, Crystal, was able to donate half of her liver to replace Tigerlily’s. While that transplant has given Tigerlily a new life, it is not a cure and comes with it’s own set of issues. The medicines she takes make Tigerlily more vulnerable to illness, but she is resilient and shows us all what an incredible inspiration she is every day!

She is now 10 years post transplant! Tigerlily is amazing in so many ways and she is giving back by raising awareness through the American Liver Foundation. She has been the LIVEr Champion at other ALF New England events and helps people understand that liver diseases affect all types of people. Her hope is that one day the funds raised will help find a cure for her disease and many of the others out there.

Meet Brian, a face of liver disease:

At age 24, after 12 years of battling colitis, Brian Burke was diagnosed with Primary Sclerosing Cholangitis (PSC). PSC is considered a rare liver disease, but it is 70% more common for people with inflammatory bowel disease like colitis. In patients with PSC, the bile ducts inside and outside the liver are narrowed by inflammation and scarring. The cause is unknown and no cure exists.

From age 24 to 27, Brian continued to be in and out of the hospital for days, and sometimes weeks, with episodes of high fever, itching, jaundice and pain on his right side. His daughter, Hannah, spent the first 4 years of her life visiting him at Massachusetts General Hospital. He lost 100 pounds and didn’t look or feel like himself. After countless tests, antibiotics and invasive procedures, Brian would go home and wait for it to happen all over again. His appearance changed so much that close friends did not recognize him. Clearly, something had to be done. The first issue the doctors tackled was Brian’s colitis. After 14 years with colitis, his “sure cure” was the complete removal of his colon. The surgery put Brian in better health for the hard decision that came next: addressing his PSC by putting his name on the list for a liver transplant.

After another year of living with his illness, Brian’s doctors talked about having a “live donor” transplant. The liver is a unique organ because doctors can replace an unhealthy liver in one person by transplanting only a portion of the liver from a healthy person. If everything goes well, within a few months both the donor and the recipient will have regenerated, functioning livers. In Brian’s case, his brother-in-law risked his own life to save Brian’s by donating part of his healthy liver.

On August 21, 2001, surgeons removed 60% of Brian’s brother-in-law’s liver and transplanted it to Brian. The entire procedure took 14 hours. The day after surgery, both were both doing well and beginning their recovery. It truly was a miracle. On only the first full day of recovery, Brian felt 100 times better than he did prior to transplant and even got back the rosy red cheeks he had lost for 6 years. His brother-in-law went home after five short days in the hospital and has not had any complications from surgery. He lives a normal life helping others, as he did when he stepped up to help Brian.

Within four months of his surgery, Brian was back to work and playing hockey again. For the past 12 years, he has not spent a single night in the hospital and has had no complications from the transplant. Brian’s family has also grown since his transplant – in 2003 they welcomed their daughter Emma to the world. Brian is now able to enjoy life, coach his daughters’ teams and spend quality time with his family. On August 21, 2013 he will celebrate his 12 year transplant anniversary!

Want to learn more about liver diseases? Watch this video.

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Over 30 million Americans are affected by liver diseases. Don't think you can help?

Think again.

Page updated: March 4th, 2013