Patient Stories Archives

Using Your Voice: One Patient’s Advice on Establishing the Best Care for You

Patient Resources, Patient Stories / By Skye Shrader

Unsure of the treatment she was receiving, Elizabeth Stutzmann devised a system to establish the best care to treat her pancreatitis. In 2020, Elizabeth Stutzmann found herself in a Long Island hospital after experiencing severe abdominal pain. She was diagnosed with chronic pancreatitis – a rare condition she had never heard of before – which affects around …

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Patient Story: Diagnosing Hereditary Pancreatitis: Rhiannon’s Story

Patient Stories / By Megan Golden

Rhiannon Bending, 31, shares her story with hereditary pancreatitis Although Rhiannon’s father had chronic pancreatitis, doctors were unaware that hereditary pancreatitis can be passed down through genetics and kept reassuring that her that she will not suffer from the disease. Genetic testing gave her the answers she so badly needed– she has hereditary chronic pancreatitis. …

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Patient Story: Chronic Pediatric Pancreatitis and Chronic Pain: Ashlynn’s Story

Patient Stories / By Megan Golden

Ashlynn Nieve, 18, shares her story with pediatric pancreatitis Chronic pediatric pancreatitis patient Ashlynn Nieve (18) talks about how long she had to wait for her diagnosis, how her chronic pain often kept her from attending school and how she coped with prejudice and discrimination without losing hope. Ashylnn has been suffering from chronic pediatric …

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Avoiding Pancreatitis Complications: Seeking Proactive Care

Patient Stories / By Rohit Sharma

My First Pancreatitis Complications My first (diagnosed) pancreatitis complications occurred in 1998 after I had eaten lunch. It was a shooting pain that rendered me immobile. I was in excruciating pain and later learned I had been in a coma for a few hours. Doctors told me that I had suffered an episode of acute …

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Blog: Meditation for Pain Management: My Experience

Patient Stories / By Eric Golden

The Challenge: Intense Chronic Pain from Pancreatitis Dealing with chronic pancreatitis has been perhaps the biggest challenge in my life. I am luckier than most with the disease – I can work full-time and do most of the activities that are meaningful to me, rarely have to be hospitalized, and feel blessed to have a …

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Blog: My Experience with Pancreatic Enzymes (PERT)

Patient Stories / By Rohit Sharma

I read Liz’s blog and her journey with exocrine pancreatic insufficiency (EPI) resonated with my own experience. The one difference – since the diagnosis, seven years and counting – I continue to calibrate my enzyme dosage. Here is my experience with pancreatic enzymes. My first (diagnosed) acute pancreatitis attack happened in 1998 and I was …

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Blog: Pancreatic Enzymes and Pancreatitis: My Experience

Patient Stories / By Elizabeth Jacobs

Road towards a pancreatitis diagnosis My journey with pancreatitis started when I was about 10 years old. Throughout my years in school (elementary, middle and high school), I was misdiagnosed with a “sensitive stomach.” My pain was not taken seriously by doctors. I was sent to several counselors while I was in college because, despite …

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Seeking Treatment for Chronic Pancreatitis: Laura’s Story

Patient Stories / By Megan Golden

Stabbing Pain Leads to Acute Pancreatitis Diagnosis In December 2018, Laura Perry, a 24-year old previously-healthy law student, began experiencing abdominal pain after returning home from a trip to Mexico with her family. While in Mexico, Laura had contracted an infection. Believing that it was nothing serious, her doctor prescribed antibiotics. The antibiotics were unsuccessful …

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Kayla-Ann Keagy: Courage Award Recipient Tells Her Story

Patient Stories / By Megan Golden

At the 2018 LA Party for a Cure fundraising event, Mission: Cure had the honor of awarding the Courage Award to four remarkable young individuals living with chronic pancreatitis. While the event as a whole was a verifiable success, raising over $150,000 to support the search for a cure, it was the stories of Matthew …

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