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. My journey with chronic pancreatitis (CP) and ansa pancreatica (a rare genetic duct abnormality) has been long, painful, and at times, incredibly isolating. It has made me stronger, more compassionate, and more determined to help others who feel invisible, just as I once did.
When the Pain Became Impossible to Ignore
For as long as I can remember, I struggled with stomach pain. When I turned 15, everything changed. Suddenly, I was constantly in and out of the hospital, unable to keep food down, living in a cycle of fear and confusion. Doctors found gallstones and removed my gallbladder, but the pain didn’t stop; it only grew worse.
What made it harder was being told repeatedly that it was “just anxiety” or “just acid reflux.” Hearing that broke me. I know my body – I knew something was deeply wrong, yet I felt dismissed, unheard, and invisible. Looking back, it is painful to think about how much suffering could have been alleviated if someone had listened sooner.
Everything shifted when I met Dr. Trevor Laborda at Primary Children’s Hospital. He was the first doctor who truly saw me. He listened, believed me, and finally gave me answers: chronic pancreatitis and ansa pancreatica. I was shocked — I had never heard either condition before. My grandpa passed away from pancreatic cancer when my mom was young, so I knew of the pancreas but I had never heard of pancreatitis. For the first time in years, I felt a sense of hope, but receiving a lifelong diagnosis at such a young age was overwhelming. It did not sink in right away, but when it did, it hit hard. I did not know anyone else with the same condition, and I felt alone in a way that is difficult to describe.
High school became a blur of hospital rooms, procedures, and days spent curled up in pain. I missed more than 150 days of school. I watched my friends live normal teenage lives while mine revolved around survival. CP felt like constant stabbing in my upper abdomen — sharp, relentless, and terrifying. Sometimes it felt like my chest was collapsing, like I could not breathe. In addition to the pain, food became something I feared. I ate bland, tiny portions while everyone around me enjoyed meals I could only dream of tasting without having pain.
Finding Strength in the Pancreas Community
Pancreatic disease does not just affect the person who has it; it affects entire families. It drains you physically, mentally, and emotionally. It changes relationships. It tests your strength. It demands a kind of resilience most people never have to imagine.
Through all of this, the pancreas community has been a lifeline. The people I have met – patients, survivors, caregivers – have made this journey feel less frightening and far less lonely. They understand the pain, the fear, the frustration, and the small victories that others overlook. They have become shoulders to lean on, voices of encouragement, and reminders that none of us are fighting alone.
I met some people who have attended Camp Hope at the NPF PancreasBowl in Salt Lake City, and from there, met a lot of others living with CP through social media and mutual connections. Attending Camp Hope was so much fun and a great way for everyone to get together who understand each other on a different level, no judgement — just pure love and compassion. It was very healing seeing others with insulin, pumps, CGMS, alarms going off, and seeing others take Creon and count their carbs. I wish no one had to go through this, but it was also very helpful and made me feel less alone to feel heard and seen.
Advice and Advocacy
I share my story because I want more awareness, more compassion, and more understanding for those living with chronic pancreatitis. I want people to know how real this disease is, how deeply it affects every part of a person’s life, and how desperately patients need to be heard
. If my story can make one person feel less alone or help one doctor listen a little more closely, then everything I went through has meaning.
I would tell newly diagnosed patients that they are so much stronger than they know and give themselves credit. This disease is so hard, and no one should ever have to go through this, but they are my heroes and are people I look up to. Keep fighting and being the amazing human you are. Never be afraid to use your voice and advocate for yourself. You are not alone and you have so many people cheering you on who will be in your corner every step of the way!
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