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Patient/Caregiver Stories

Jordan’s Story

How old was Jordan when he had his first pancreatitis attack? What were the symptoms? What did you think it was initially? 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… Read More »Jordan’s Story

Dee’s Story

My exocrine pancreatic insufficiency (EPI) symptoms started in my thirties with diarrhea on a daily basis and constant hunger as a result. I didn’t understand why it was happening and used anti-diarrheal medication to try to lessen symptoms.  My weight would fluctuate and because of this I had bouts of gastritis frequently. All the physicians… Read More »Dee’s Story

Victoria’s Story

Hi, my name is Victoria Wade. I am 22 years old, and I have chronic/hereditary pancreatitis. How old were you when you had your first bout of pancreatitis? I had my first undiagnosed attack at 8 years old. However, my first diagnosed pancreatitis attack was at 18 years old. What did you think it was… Read More »Victoria’s Story

Matthew’s Story

Our son Matthew was born in December of 2019.  Shortly after he was born, our trips to the ER seemed never ending. January of 2020 was when Matthew started having stomach issues. He had problems taking his bottle and also had a lot of problems with spit up. All doctors we spoke to about our… Read More »Matthew’s Story

Zoey’s Story

Can you tell us about what happened to Zoey’s pancreas? Zoey’s pancreatic injury happened on July 22, 2020. It was an extremely hot day, so Zoey and her brother, Zachary, were inside for most of the day. After dinner, they asked to go outside and ride their bikes. We live in an area where there… Read More »Zoey’s Story

Ezra’s Story

Ezra was 9-years-old when he had his first pancreatitis attack. In this story, his parents recount his journey with pancreatitis, how they learned to advocate for their son, and provide advice for caregivers going through the same situation. It happened suddenly. Very early one morning, I received a phone call from Ezra’s friend’s mom. Ezra… Read More »Ezra’s Story

Soniya’s Story

How old were you when you had your first bout of FCS? What were the symptoms? When I was a baby, younger than a year old, I had a soft lump on my upper back just between my shoulder blades. My parents had taken me to the doctor to get it checked out. They said… Read More »Soniya’s Story

Bella’s Story

Bella’s Mission to Help Kids Like Her   Most every kid deals with a fear of monsters at some point. Monsters under the bed or in the closet. Monsters in movies or books that later make a special guest appearance in our dreams.  As a carefree 12-year-old, Bella was almost a teenager—old enough to know that… Read More »Bella’s Story

Jenny’s Story

Mental Health and Pancreas DiseaseBy Jenny Jones, Pancreatitis Patient Advocate I started getting sick with pancreatitis when I was in third grade, 9 years old.  This disease impacted me physically and mentally.  I was in excruciating pain, unable to gain weight, feeling alone, misunderstood, and very different.  As a result, I became anxious and depressed.  As a … Read More »Jenny’s Story

Edmund’s Story

My pancreatitis journey began in 2017; although at first – I didn’t know it was pancreatitis. It began with a stabbing pain that shot through my back. Since I’ve had four back surgeries, I thought the pain could be orthopedic in nature. I saw my orthopedist and began by getting lumbar shots, acupuncture and physical… Read More »Edmund’s Story