Beyond Weight Bias: Lessons from a Patient’s Progression to Stage 4 MASH

For many clinicians, metabolic dysfunction-associated steatohepatitis (MASH) — formerly known as NASH — presents a diagnostic and management challenge. Dianne Gillard’s story, a U.K.-based patient advocate, highlights the real-world consequences of missed diagnostic opportunities and underscores the need for earlier detection, patient-centered communication, and system-wide changes in fatty liver disease screening.

Gillard’s experience reflects the growing global burden of MASH, with more patients progressing silently toward cirrhosis before diagnosis.

Nearly Two Decades of Missed Opportunities

Although Gillard was officially diagnosed with MASH in 2021, her symptoms began nearly 19 years earlier. In 2002, she presented with leg swelling — a non-specific symptom that could suggest liver dysfunction among other causes. Instead of further investigation, her physician recommended weight loss and referred her to a commercial weight loss program.

“My doctor told me to lose weight and gave me a voucher for 20 weeks at Weight Watchers,” Gillard recalled. “But that was the start of nearly two decades of being overlooked.”

Her case illustrates a common scenario in primary care: Liver enzyme abnormalities and radiologic findings that go unflagged or under-addressed. Between 2008 and 2013, Gillard’s records revealed multiple missed opportunities: abnormal liver function tests, a scan showing fatty liver, splenomegaly, and gallstones—all of which were not followed up.

By the time she underwent FibroScan and further evaluation at King’s College Hospital in 2021, she was diagnosed with Stage 4 MASH with cirrhosis and fibrosis.

Emotional Impact and Patient Trust

Following her diagnosis, Gillard described feelings of shock, anger, and mistrust toward the healthcare system.

“Looking back, the signs were there, but they were ignored,” she said. “I was treated like just another overweight patient who didn’t take care of herself.”

Her story reflects a broader patient perception issue in MASH care: Weight bias, diagnostic inertia, and fragmented follow-up often create long-term emotional scars and distrust of the medical system.

Clinical Trial Participation and Ongoing Management

After diagnosis, Gillard entered a clinical trial at King’s College Hospital, receiving investigational infusions for three years with close monitoring.

“The trial saved my mental health as much as my physical health,” she said. “Regular scans, blood tests, and follow-up made me feel safe and seen.”

Her experience underscores the psychosocial benefits of care continuity and patient engagement in clinical research — especially for chronic conditions where disease-modifying therapies remain limited.

Lifestyle Change and Real-World Barriers

Despite her commitment to change, Gillard admits that lifestyle modification remains a challenge.

“With two sick parents, a disabled husband, and kids at home, I often put myself last,” she said. “Takeout was quick and easy.”

This patient reality aligns with clinical evidence showing that social determinants — such as caregiving burden, food insecurity, and emotional stress — often hinder lifestyle adherence in MASH patients.

Today, Gillard uses food labeling as a personal guide, targeting foods with “yellow and orange” nutritional content instead of red-flagged options. She also highlights the difficulty of making healthy choices in an environment where fast food is accessible, affordable, and aggressively marketed.

Advocacy and the Push for Early Screening

Gillard’s experience with the Global Liver Institute (GLI) — including her attendance at the European Association for the Study of the Liver (EASL) Congress and GLI’s Advanced Advocacy Academy — has empowered her to speak publicly about MASH, patient stigma, and the need for screening reforms.

Her biggest call to action: Screen earlier — starting in adolescence.

“I watch kids buying fried chicken and chips after school every day,” she said. “We should be screening starting at 13. If we wait until adulthood, it may be too late.”

Gillard even calls for policy changes that mirror public health strategies used against tobacco. “Why not put warning labels or diseased liver images on fast food packaging?” she asked.

Clinical Takeaways for Physicians

• Act on abnormal LFTs and imaging findings, even in patients without classic risk profiles.
• Screen at-risk populations proactively, including younger patients with obesity or metabolic syndrome.
• Address patient stigma and weight bias during liver disease discussions.
• Refer early for hepatology consultation and consider FibroScan use where available.
• Recognize barriers to lifestyle change and offer practical, personalized support.

Dianne Gillard’s story is not just a patient narrative — it’s a call for earlier action and better communication across healthcare settings.