As a young woman, Lindsey Fontenot loved sports and being outside. She participated in a variety of extracurricular activities during her freshman year of high school, including field hockey, soccer, and crew. That summer, however, she was diagnosed with pancreatitis, and her life completely changed. Pancreatitis is a disease in which digestive enzymes become activated while still in the pancreas, which irritates pancreatic cells and causes inflammation in addition to symptoms, such as pain, nausea, vomiting, and weight loss. Genetics, structural abnormalities, diet, and alcohol consumption are possible factors related to pancreatitis flare-ups. In some cases, modifications to diet can help reduce flare-ups but cannot prevent them altogether. The Peer Reviewed Medical Research Program (PRMRP) addressed pancreatitis as a Topic Area in fiscal years 2011, 2013–2020, and again in 2022.

For Lindsey, a pancreatitis diagnosis meant having to stop playing sports and missing out on activities during her teenage years. What started as infrequent episodes and hospital stays became monthly events. She eventually required a Peripherally Inserted Central Catheter (PICC) line for nutrition as well as strong medication for pain. The frequent trips to the hospital also meant missing school and spending a large amount of time studying and taking exams while in the hospital.

When Lindsey was well enough to attend social events, she had to be very careful about what she ate to prevent flare-ups. This period was difficult for her – physically, mentally, and socially. When she experienced such pain that she could not eat, she decided to undergo a total pancreatectomy with islet autotransplantation surgery. During this procedure, the pancreas is removed and insulin-producing cells in the pancreas (islets) are transplanted to the liver. Since the procedure, she must watch for a few symptoms, such as low blood sugar and anemia. However, she no longer experiences pancreatic pain.

Lindsey started her advocacy journey in college when she reached out to the National Pancreas Foundation (NPF) to start a club at University of California, Los Angeles (UCLA). Her primary intent was to raise awareness and donations for pancreatic diseases, and with the NPF’s help, an NFP chapter was established at UCLA. To provide hope for pancreatitis patients, Lindsey shared her story while volunteering with the NPF. Her work and storytelling attracted the attention of the NPF staff, who encouraged Lindsey to serve as a consumer peer reviewer for the PRMRP.

Lindsey was excited to participate in the PRMRP’s fiscal year 2022 review cycle and hopes to return for future review cycles.

“The entire process has been a joy,” she said. “From nomination and application to the end of the review process, I have been excited to help out and learn. Everyone I’ve worked with, from the administrators to scientist reviewers, has been so welcoming and encouraging.”

Now, as a healthy, 23-year-old, Lindsey hikes near her home in Berkeley, California, and practices yoga. She picked up painting and reading while she was sick, and years later she continues to enjoy them. Having graduated in 2021 with a bachelor’s degree in microbiology, immunology, and molecular genetics, she continues her education at the University of California, Berkeley’s Metabolic Biology Ph.D. program. There, she works in a research lab studying nuclear receptors and their interplay with inflammatory bowel diseases. She also plans on working with the NPF again to bring a chapter to her new school as a student organization.

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of the Army position, policy, or decision.