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Misdiagnosed for a decade, Amyl turned to University of Minnesota Health for answers—and hope

Amyl Ahola, diagnosed with sarcoidosis, is helping a multidisciplinary team of physicians and researchers demystify this complex condition.
Amyl Ahola founded the Sarcoid Research and Education Foundation, promoting education and research at the University of Minnesota, his alma mater.

It’s fitting that high-tech research of sarcoidosis takes place in Minnesota. After all, it’s a “snowflake” disease, one that uniquely affects each person. 

Amyl Ahola, a technology executive, was misdiagnosed for nearly a decade before turning to his alma mater, the University of Minnesota. Here, in 2010, University of Minnesota Health Pulmonologist and Critical Care Physician Maneesh Bhargava, MD, PhD, at our Center for Lung Science and Health, correctly diagnosed what had been ailing Ahola all along: sarcoidosis. 

Because there is no definitive diagnostic test for this disease and symptoms are wide-ranging—from a persistent cough to blurred vision to heart failure and more—sarcoidosis can be extremely challenging to identify. 

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To make matters more challenging, researchers have yet to understand what causes the autoimmune disease that can affect multiple organ systems. They also can’t answer why a significant percentage of patients are asymptomatic and why some see the disease disappear. 
Still, for those whose experience with sarcoidosis is profound, quality of life can be greatly diminished. That’s why Ahola decided not only to personally support sarcoidosis research—“It became obvious to me that more research needed to be done,” he said—but to found the Sarcoid Research and Education Foundation, promoting education and research at the University. 

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Since 2013, Ahola’s nonprofit has provided financial support for a “biobank” under Bhargava’s direction.

“We look at different proteins present in the blood at diagnosis,” said Bhargava, whose team has been collecting blood samples for a year or so. They’ve also just begun to collect lung tissue samples and lymph node tissue samples. 

Thanks to Bhargava’s doctorate in biomedical informatics and computational biology, he and his colleagues are taking the research to a new level with proteomics—the large-scale analysis of proteins in the body. They are studying protein expression patterns using mass spectrometry, looking at hundreds of proteins at a time per patient. The goal of the multidisciplinary team—which also includes experts in cardiology, neurology, and computer science—is to discover protein expression patterns that can help predict the extent and course of the disease. 

“This is a very exciting time for biomedical research,” says Bhargava. “Technology has improved so much over the last several years, and we can get new insights into what’s causing complex diseases. We didn’t have these kinds of powerful tools available to us until now.” 
It couldn’t have happened without Ahola’s support. “It’s absolutely critical to have funding,” says Bhargava. “Nothing will change without funding for research.” 

Today, Ahola still experiences systemic sarcoidosis. But thanks to Bhargava’s research, he’s hopeful.