While liver disease is often associated with poor lifestyle choices, or an elder person’s disease, the truth is that liver disease is estimated to affect 30 million people or 1 in 10 U.S residents, many of whom lead healthy, active lives. That said, a shocking 70% of those living with liver disease are completely UNAWARE of their illness. What’s more, out of 11 regions in the country that offer liver transplants, New England is among the three worst in supply in demand (in the company of New York and California). Each year in New England, there are roughly 1,100 individuals on the list for a liver transplant, but there are only 250-270 transplants each year, which means that less than one third of individuals waiting for a liver transplant locally receive one.

In an effort to break the stigma and lack of awareness of liver disease, the New England chapter of the American Liver Foundation recently launched an awareness campaign called “The Face of Liver Disease,” which is supported by an outdoor billboard (attached), PSAs and a dedicated webpage at thefaceofliverdisease.org. The copy reads: Think you know the face of liver disease? Think again. Three “faces” are featured on the visual:

1)      Tigerlily White, of Falmouth, ME, is a spunky 12-year-old, who was born with a rare form of biliary atresia – a liver disease without a cure and a cause that is not fully understood. Her mother Crystal was able to donate half of her liver to replace Tigerlily’s. Today, 10+ years post-transplant, Tigerlily is living a healthy, happy life.

2)      Brian Burke, of Beverly, MA, was diagnosed with Ulcerative Colitis at age 12 and  then  Primary Sclerosing Cholangitis at age 24. From age 24 to 27, Brian lived in and out of the hospital for days, sometimes weeks, and lost 100 pounds.  After thinking the end was near, Brian went to the extreme and explored having a “live donor” liver transplant, where ultimately, in 2001 it was determined that his brother-in-law was best suited for the surgery and willing to risk his life to save Brian’s.  60% of his brother-in-law’s liver was successfully removed and transplanted to Brian, and today, Brian is living an active, healthy live 10+ years post-transplant.

3)      Michael Kim, of Newton, MA, was diagnosed with hepatitis B at age 18 and was treated with a course of interferon and didn’t feel the need to change his lifestyle. Fast forward to 2004, when Michael’s liver enzymes spiked astronomically and threatened his life. He completely changed his life: began exercising; quit drinking alcohol and turned to a liver-friendly diet. Running became a hobby and, suddenly, Michael was 50 pounds lighter. Michael began running the Boston Marathon for ALF’s Run for Research® team, and to date, Michael is one of the team’s largest fundraisers, garnering over $10,000.

Brian’s Story:

At the age of 12, Brian was diagnosed with Ulcerative Colitis and battled the disease for 12 years.

Then at the age of 24, he was diagnosed with Primary Sclerosing Cholangitis (PSC). PSC is a rare disease where the bile ducts inside and outside the liver are narrowed by inflammation and scarring. The cause is unknown, but it is 70% more common in people with Inflammatory Bowel Disease, like colitis.

From age 24 through 27, Brian continued to be in and out of hospitals for days, sometimes weeks. In that time he lost 100 pounds, experienced high fevers, itching, jaundice, and pain on his right side. After countless tests, antibiotics and endoscopic procedures he would go home and wait for it to inevitably happen again. After consulting with numerous doctors, the decision was made to remove his colon, and eventually pursue a “live donor” liver transplant.

Eventually Brian’s brother-in-law was determined to be the best match. On August 21^st, 2001, Brian and his brother-in-law underwent surgery. 60% of his brother-in-laws liver was successfully removed, and transplanted into Brian.

After four months of surgery, Brian went back to work and began playing hockey again. Since then he has had zero complications from his “live donor transplant.” He hopes his story will reinforces the reasons people should be aware of and support the American Liver Foundation.