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Thinking back, Jenni Tucker—a 22-year-old aspiring alcohol-and-drug-abuse counselor from Southbridge, Mass.—acknowledges that the first red flag popped up during an annual physical in middle school.

“My doctor ran a routine blood test and noticed that my AST and ALT enzyme levels [which detect liver cell injury and inflammation] were elevated,” Tucker says. The elevation was mild, so Tucker’s doctor told her not to worry, but recommended a healthier diet and exercise.

Tucker, not realizing the severity of the threat rising inside her, didn’t heed her doctor’s advice right away, and her liver function test results quickly escalated to dangerous levels. “At one point, my numbers were in the 300-400 range, when they should normally be around 20-30,” Tucker says.

With her numbers continuing to rise, Tucker was sent to a liver specialist to get conclusive answers. After undergoing a liver biopsy, Tucker learned she had nonalcoholic steatohepatitis, or NASH.

“I was so scared because I had no idea what this disease was,” Tucker says. “And as I learned more about it, it sounded like something an older person should have, not a 19-year-old.”

A silent disease, an active solution

NASH is an inconspicuous disease. Many patients unknowingly live with it for years before being formally diagnosed. Often, diagnosis occurs at a later, more dangerous stage when liver function test results become too high to ignore or severe liver damage has already occurred. Add to this the fact that many physicians are unaware of the potential signs before it gets too late, and you have the long, difficult journey to diagnosis experienced far too often by patients with NASH.

“I had an ultrasound done early on and the results came back with fatty liver disease,” Tucker says. “My doctor told me this was pretty common, but what he didn’t tell me was how serious things could get if they progressed. That I learned when it was almost too late.”

Characterized in part by the excessive accumulation of fat in the liver, NASH is heavily influenced by lifestyle—like high-calorie diets and sedentary routines—and is closely linked to patients with diabetes, obesity, and cardiovascular disease, as well as, in some cases, genetics. These risk factors can lead to liver swelling, scarring, and worse: “My doctor told me I was about a year away from stage 4, or cirrhosis of the liver,” Tucker says.

Luckily for Tucker, much of the damage caused before NASH enters stage 4 is reversible. However, since there are no medications available to directly combat NASH, treatment consists mainly of diet and exercise, which can present challenges for patients.

“We basically had to relearn everything we knew about nutrition and recalibrate our entire lifestyle,” says Tucker, whose mom and dad also committed to sticking to her recovery plan. The Tucker family researched healthier food options and started cooking with less salt and more fresh veggies. They also started exercising regularly, beginning with two-mile walks and transitioning to sessions at the local gym multiple times a week.

“After a while, I began to have so much energy and thought to myself, ‘This must be how everyone else feels,’” Tucker says. “I could feel my body becoming healthier and could tell, by gauging my energy level and seeing color slowly rise to my cheeks, that what we were doing was making my liver happy.”

And she was right. Tucker underwent another biopsy in April 2018, almost two years after her NASH diagnosis, and the results showed her NASH had improved: After she and her parents lost a combined 150 pounds, her diagnosis regressed back to stage 1.

The future of NASH

Since committing to a healthier lifestyle and seeing how changes in her diet and activity level can directly affect her health, Tucker now looks forward to being an advocate for NASH in hopes of helping others in the future.

This is what recently led her to Pfizer’s Kendall Square outpost to sit down with Ann-Marie Richard, a scientist whose job as a patient engagement specialist connects her with patients like Tucker. In a letter to Richard, Tucker outlines her journey and emphasizes the need for more options.

As the bridge between patient and scientist, Richard speaks with many patients to learn about their specific experiences in order to help guide the direction of the research toward patients’ actual needs. “What we know about NASH is that it’s a silent killer because there are often no symptoms early on,” Richard says. “Did the disease impact your life in any way before you were formally diagnosed?”

“Before I was diagnosed, I was tired, like, all the time,” Tucker responds. “Beyond that, nothing signaled to me that I was sick.”

“This is why it’s such an under-recognized and under-diagnosed disease,” Richard says, explaining that NASH does not always present with recognizable symptoms, even in patients in advanced stages of the disease.

Following up, Tucker asks that if that’s the case, what can be done to help patients who don’t even know they’re sick? To this, Richard responds: “Many of the treatments we’re developing are aimed at addressing the underlying metabolic drivers of the disease, as well as risk factors that are associated with NASH, such as obesity, diabetes, and fat accumulation in the liver. We believe that, by addressing these drivers, NASH can be resolved or improved, and we’ll be more successful in trying to prevent progression to cirrhosis, which is more advanced and may be more difficult to treat.”

Richard asks Tucker what she would most like to see in future treatments of NASH. “If we could figure out a way to get a diagnosis without having to undergo a biopsy, that would be incredible, and way less painful,” Tucker says. “Also, having earlier treatment options would be such a big help because people wouldn’t have to wait until it gets dangerously advanced to be diagnosed.”

Richard praises Tucker on the salience of both points, noting Pfizer’s work with a number of consortia to develop biomarker alternatives to biopsy. She also highlighted that an understanding of the patient journey is critical to developing novel therapies, mentioning that NASH is predicted to be the leading cause of liver transplants in the next ten years.

“But you are an inspiring and special case,”Richard says. “The fact that you’ve changed your lifestyle with diet and exercising to help regress your disease is truly amazing. It’s not easy, and I really want to commend you on that.”

“Thank you,” Tucker says, before standing to give a long, well-deserved hug to the woman working hard to change the future of the disease that almost cost her a liver.