These Marathon Runners Didn't Let Chronic Liver Disease Slow Them Down

Just shy of her 40th birthday, Robin Turner was diagnosed with a rare form of incurable liver disease called primary biliary cholangitis (PBC). 

Turner, now 43, didn’t let the diagnosis get in the way of her active lifestyle. She has been an avid runner for over a decade, and recently beat her personal record in the Chicago Marathon as the chair of the American Liver Foundation’s team.

Liver disease affects more than 100 million Americans, but those with rare liver diseases may go on for years without a diagnosis.

“When people think of liver disease, they always think of alcoholic or fatty liver disease. But some liver diseases present themselves at birth or they can be autoimmune related, like mine,” Turner said.

PBC, previously known as primary biliary cirrhosis, is an autoimmune disease that can cause inflammation and destruction of the bile ducts, potentially leading to impaired liver function and scarring.

"I really thought that I wasn’t going to have much time. It’s a liver disease that has no cure," Turner said.

Scientists don't know what causes PBC, but it might be related to genes of environmental triggers, according to Gideon Hirschfield, PhD, a professor of medicine specializing in autoimmune liver disease at the University of Toronto.

"Largely, people can't stop themselves from getting PBC. It just happens," Hirschfield told Verywell.

Changing estrogen levels might play a role in the development of PBC since this disease is most common in women between the ages of 45 and 65, he explained, but more research is needed to fully understand this link.

"It's important that we diagnose it and important that we treat it," Hirschfield said. "If we don't, it can lead to scarring of the liver, which is cirrhosis, and then all the complications that come with cirrhosis."

In addition, Hirschfield encourages patients with an early PBC diagnosis to adopt certain lifestyle behaviors, such as drinking only in moderation, exercising, eating a nutritious diet full of fruits and vegetables, and not smoking.

After receiving her diagnosis, Turner started treatment immediately and found some relief for her symptoms. While her medications helped slow the progression of the disease, she limited her salt and alcohol intake and focused on reducing her stress levels.

Connecting with support groups has helped Turner cope with her liver disease. Through a mutual running friend, Turner met Jessica Chipkin-Klein, another marathon runner who was diagnosed with Wilson's disease—a genetic disorder that results in excessive buildup of copper in the body.

Before receiving her diagnosis at 21 years old, Chipkin-Klein had a variety of symptoms, including lethargy, anxiety, and vomiting. She received a liver transplant shortly after her diagnosis.

Lisa Ganjhu, DO, a hepatologist at NYU Langone Health and clinical associate professor at NYU School of Medicine, said Wilson's disease can be difficult to diagnose and it's rarely picked up at a screening unless the patient has a family history of the disease.

"There are a lot of other things that present before the actual liver failure itself," Ganjhu told Verywell. Specifically, neurologic symptoms and behavioral changes are often seen in patients with Wilson's disease before liver-related symptoms.

While there's no known cure for PBC or Wilson's disease, experts say getting an early diagnosis can significantly improve outcomes.

According to Hirschfield, treatment for Wilson's disease is quite effective and medications can help reduce copper absorption through urine excretion. Patients are also generally advised to have low copper diets, such as avoiding chocolate and seafood.

Turner and Chipkin-Klein are both active members of the liver disease community and they run together sometimes.

Chipkin-Klein said she will be running the New York City Marathon for the fourth time this year. She's now a mentor for other liver disease patients after receiving her liver transplant in 2005. While she no longer experiences symptoms related to Wilson's disease, she's still on daily medications to make sure her body doesn't reject the transplanted liver.

"Because there are so many things you cannot prevent, like this disease I was born with," Chipkin-Klein said. "I try very hard to live a healthy, balanced life mentally and physically."