Christine’s Pancreatitis Story: Living with Pancreatitis and The Importance of Hope

Question: When were you first diagnosed with pancreatitis?

Answer: I was first diagnosed in college. There was a string of events that led to my diagnosis. I was lucky in a way (to be diagnosed) because I had always experienced episodes of acute pancreatitis, but I had never realized that was what it was. I didn’t realize that it wasn’t the normal stomach bug. I didn’t realize that most people don’t regularly get really bad stomach bugs that are extremely painful.

On Thanksgiving break during my fourth year of college in 2005, my cousin was sick and curled up on her bed. She actually knew that she had pancreatitis because her sister (my other cousin) had been diagnosed with it when she was younger than 5. While I knew her sister was very sick as a child, I didn’t know it was because of pancreatitis, and I never thought I had the same disease as her because I wasn’t nearly as sick as a child. However, when I saw her having an attack this time, I knew that whatever she had, I had too. The next time I had a flare, in 2006, I went to the ER at UVA and told them I had pancreatitis. Of course, they didn’t believe me because I was so young, and I had diagnosed myself. Not only was my age atypical, but they told me that the typical individual with pancreatitis would be a man in his 60’s with a history of alcohol abuse. Even though this is incorrect, it misled them because clearly I was none of those things.

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I was in the hospital for about four days, and they ran a genetic panel, that included cystic fibrosis and other known mutations. As I was checking out of the hospital, they informed me that the test results showed that I have hereditary pancreatitis (PRSS1 gene mutation). They didn’t explain to me that recurrent acute pancreatitis can easily turn into chronic pancreatitis. They didn’t explain to me that pancreatitis leads to a higher risk for pancreatic cancer. In hindsight, it seems that they were more interested in determining why a young person had pancreatitis, instead of explaining what that meant for me and my life. To me, it wasn’t groundbreaking news that it was hereditary. I already knew pancreatitis it was hereditary because I knew my cousins had it. I didn’t know hereditary pancreatitis was rare, untreatable, or that it could be so incredibly life-changing. I thought I would have to manage my lifestyle to avoid getting acute pancreatitis. I just didn’t know…

Moreover, I didn’t think a lot about the significance behind my PRSS1 gene mutation until about 10 years later when my cousin’s daughter had GI symptoms and her mother contacted me. She wanted the information on the genetic testing I had done, so her husband (my cousin) could get tested. She asked if I could get my UVA medical records to identify my specific gene mutation because it’s much cheaper to test for a single mutation than to run an entire panel of mutations.

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