Patients & Caregivers
Whether you’re facing a new diagnosis, living with pancreas disease, or caring for someone who is, find clear information, trusted resources, and practical support to help you take the next step.
Learn about your condition, treatment options, and what to expect as you navigate life with pancreas disease.
You don’t have to figure everything out on your own. Find practical resources, supportive programs, and ways to connect, learn, and take an active role in your care.
Voices from our community, sharing experiences that bring connection and hope.

Jordan was diagnosed at the age of three. His symptoms started quite some time before his official diagnosis, but I didn’t realize that until after the fact. From an infant Jordan was diagnosed with severe acid reflux. He was never able to fully keep his formula down.

On March 19, 2021, I gave birth to our son, Noah. On March 22, 2021, I went to the ER at (Memorial Regional) for severe abdominal pains. Here, they told us that I had gallstones, but they were too small to remove, and they sent me home with Pepcid.

I’ve had stomach issues for as long as I can remember, however in the last 10 years they got severely worse and debilitating and within the last 3 years it got so bad my day to day functions were hugely impacted.

I was about 11.5- 12 years old when I had EPI symptoms, but I was diagnosed at the age of 28. This was when my condition has severely damaged and had to be frequently hospitalized.

My story began on April 1, 2022, I had been experiencing abdominal pain earlier in the week and passed it off as severe (yet unusual) period pain. It wasn’t until I was having trouble breathing that my boyfriend said it’s time to go to the emergency room.

Hi, my name is Elizabeth S., and I have idiopathic chronic pancreatitis. I am 29 years old and live on Long Island in New York. My first documented case of pancreatitis was in September of 2020.

My name is Marley C., I am in my 20s and live in West Virginia. In October 28th, 2022, at 6:30 in the morning I was in a bad car accident. The injuries resulting from this accident were kidney lacerations, grade 5 liver lacerations, and grade 3 pancreatic lacerations with duct injuries.

My journey with pancreatitis began in March 2016. My first symptoms resembled stomach flu accompanied by some mild discomfort, and a lack of appetite. I did not want to eat much more than chicken soup for a few days.

I was diagnosed with pancreatic cancer on August 26, 2021, marking the beginning of an extremely difficult period in my life. For the first month following my diagnosis, I withdrew into a noticeable funk and opted to watch TV and smoke cigarettes in quiet despair.

My first attack happened during an episode of DKA (diabetic ketoacidosis) when I was 12 years old. I thought it was stomach pain from DKA, but the attending GI confirmed pancreatitis based on the lab results and my presentation symptoms.

My name is Sandra Profitt. I am 60 years old and live in Indiana. My pancreatitis journey began on February 20th, 2012. I was experiencing a lot of indigestion and belching all day.

Avery, 12, share’s her story on living with pancreatitis, the ultimate decision on why she wanted the TPIAT, and how her life is now, one year post surgery.

Our late mother’s name is Justine Lacey. She passed away unexpectedly on January 2, 2024, at the age of 48. She was a beloved wife to our father, Shane, for 23 years.

My name is Jon Fox and I’m a survivor of two different cancers: testicular cancer and pancreatic neuroendocrine cancer. I also developed acute pancreatitis about 2 years following my Whipple procedure.

My name is Dave Repczynski and I am from the Boston area. I am 48 years old and previously a totally healthy guy. My pancreas disease journey started in September 2022, on a day just like any other.

Noah was diagnosed with chronic pancreatitis at just 6 years old and underwent the TPIAT at 8 years old. Now almost a year post-TPIAT, Noah and his mom, Millie, share their story with the hope of reminding pancreas disease families they are not alone.

Scott Reavis has lived with FCS for over 24 years, but was only diagnosed 18 months ago. In his story, he wants to let other patients living with FCS know that they are not alone and to show how he lives with FCS on a daily basis.

My name is Alexis and five years ago, I shared my story of living with hereditary chronic pancreatitis (CP).

Mom, Angie, 37, and son, Joseph, 17, have been affected by pancreas disease for nearly their entire lives.

Alicia A. from West Virginia was diagnosed with Stage 3 pancreatic cancer in 2021. In her story, she recounts the moment she received the life-altering news and the complex emotions that followed.

My name is Alicia Cook, and I’m a breast cancer survivor. Actually, by the time you read this, I’ll be able to say I’m a three-time survivor now recovering. But that’s not my reason for speaking to you today.

Hi, my name is Suzanne Jurgensen, and I live in McCallsburg, Iowa, with my husband, Aric, and our three amazing children: Sawyer (12), Nolan (6), and Avery (3).

My name is Kynlee Al‑Mosawi. I am 19 years old, and from Salt Lake City, Utah. Pancreatic disease has shaped my life in ways I never could have imagined.

When Annie was diagnosed with pancreatitis in December 2024, she was just two years old.Looking back, her family believes she had been experiencing symptoms long before that first official diagnosis.

Parker’s journey with hereditary chronic pancreatitis began long before his symptoms became severe.

My daughter Gabby was just 7 years old when she was first diagnosed with pancreatitis. For weeks, she endured worsening symptoms, including severe abdominal pain, nausea, vomiting, and oily stools.

For most athletes, pain is part of the journey. Early mornings, grueling practices, sore muscles, and mental exhaustion are expected.
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