In the beginning, it was only Uc blazing a hopeful new trail. Working in a National Institutes of Health (NIH)-funded laboratory studying cystic fibrosis-related pancreatic disease in the 2000s, she realized that the field of pancreatitis was “very underserved.”
“When I started INSPPIRE, there was very little understanding of pancreatic disease in children, and this wasn’t even all that long ago,” Uc says. “The doctors were not diagnosing pancreatitis properly. If a child presents with abdominal pain and vomiting, you diagnose only what you know. The children would not get the proper tests and treatments because no one would think of pancreatitis.”
Misdiagnoses weren’t the only issue. During those initial years, she and the INSPPIRE team fought an uphill battle.
“One very important thing is that when children present with multiple attacks of pancreatitis, genetic factors are the most common culprit,” Uc says. “Environmental factors such as smoking and alcohol are extremely uncommon. There is a stigma about pancreatitis that it’s always related to alcohol. Even with our young patients, when they present to the emergency room and get the diagnosis of pancreatic disease, they are asked whether they smoke or drink. That’s just not the case.”
A shift began to occur, however, in 2012. Uc and her colleagues published a paper in the Journal of Pediatric Gastroenterology and Nutrition that established criteria for diagnosing pancreatitis.
“It helped to have clinicians agree on a common language,” Uc says.