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March 24, 2021

My Experience with Pancreatic Enzymes (PERT)

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 diagnosed with chronic pancreatitis in 2013 following severe weight loss and multiple years living with digestive issues (such as dispersed and oily stools). When I began taking pancreatic enzymes in 2013 (without a formal diagnosis of EPI), I had no understanding of lipase, amylase or protease…
Sofia Garcia
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March 24, 2021

Pancreatic Enzymes and Pancreatitis: My Experience

Road towards a pancreatitis diagnosis #Creoninthewild Hawaii 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 my symptoms, doctors believed that the pain was in my head. I received prescriptions for chocolate as a way to ‘just calm down’ and let go of some stress. This was probably well-intentioned but clearly did not address the source of my intense…
Sofia Garcia
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Shows Mission: Cure's team at PancreasFest 2019.
Clinical TrialsClinical TrialsGeneticsGeneticsNewsRepurposing Drugs
September 5, 2019

Mission: Cure Update: PancreasFest and Progress

PancreasFest 2019 unveiled promising scientific discoveries and exciting collaboration opportunities, and Mission: Cure was there! Mission: Cure's Team at PancreasFest 2019. Big thanks to our amazing interns from Brown University and Amy Jensen who shared her story of living undiagnosed with chronic pancreatitis. Yes, PancreasFest is the name of a scientific conference held annually in Pittsburgh, PA in July where leading physicians, researchers and patient advocates share new discoveries, discuss results of the latest research and identify best practices for diagnosing and treating pancreatitis, pancreatic cancer and other pancreatic diseases. Two of Mission: Cure’s projects were featured before this highly…
Megan Golden
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Alcohol and pancreatitis
March 24, 2021

Pancreatitis and Alcohol

The connection between pancreatitis and alcohol is widely misunderstood. Many people think that drinking alcohol causes chronic pancreatitis... This is WRONG! New studies are debunking old claims that pancreatitis is a disease of alcoholics. Alcohol alone does not directly cause chronic pancreatitis. The widespread belief that chronic pancreatitis is usually caused by alcohol abuse is harmful. Because most doctors believe that drinking is the most common cause of chronic pancreatitis: Patients don’t get the best care Children are accused of drinking Parents of young patients are accused of giving their children alcohol Light drinkers aren’t properly diagnosed after attacks because…
Sofia Garcia
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March 24, 2021

Dosing Pancreatic Enzymes

Correct dosing of pancreatic enzymes is a big challenge for patients who suffer from EPI. We've heard from patients that once they receive they are told they have EPI, they are not guided or walked through what this means for them going forward. When are they supposed to take their pills? How do they know if they're on the right dose? In light of this, we've put together a video with Dr. Steven Freedman, a leading expert in pancreas disease and cystic fibrosis. This short, 5-minute guide will answer all the aforementioned questions and more. We hope that, after watching…
Sofia Garcia
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PERTs for Chronic Pancreatitis
December 9, 2020

Exocrine Pancreatic Insufficiency and Pancreatic Enzymes

What is Exocrine Pancreatic Insufficiency (EPI)?  EPI --when the pancreas does not secrete enough digestive enzymes-- is common in people with chronic pancreatitis. This is because as the pancreas gets scarred, the part of the pancreas that generates enzymes is destroyed and thus is unable to produce these enzymes that are essential in the digestive process. Leading causes of EPI:  Chronic pancreatitis: 15-30% prevalence Pancreatic restriction/older age: 15-40% prevalence Cystic fibrosis: 80-90% of CF patients All infants up to 6 months of age! What happens if you have Exocrine Pancreatic Insufficiency or EPI? EPI causes 4 main problems: Carbohydrates are…
Sofia Garcia
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Exocrine Pancreatic InsufficiencyExocrine Pancreatic InsufficiencyExocrine Pancreatic InsufficiencyExocrine Pancreatic InsufficiencyExocrine Pancreatic InsufficiencyPatient Resources
March 25, 2019

EPI and Pancreatic Enzymes: Expert Doctor Answers Patient Questions

Dr. Steven Freedman of Beth Israel Deaconess Medical Center and Harvard Medical School Dr. Steven Freedman, MD, Ph.D., a worldwide expert on pancreatic disease and cystic fibrosis, presented on Mission: Cure’s Pancreatitis Patient Webinar on Exocrine Pancreatic Insufficiency (EPI) and Pancreatic Enzyme Replacement Therapy (PERT). EPI is one of the symptoms of pancreatitis. For a more comprehensive overview of EPI, please read this article.  Pancreatic enzymes are a confusing but critically important part of chronic pancreatitis treatment. If you missed the webinar, you can watch it here:  We had so many questions during the webinar that we could not get…
Linda Martin
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Pediatric Pancreatitis
November 29, 2019

Scary Medical Procedures Can Cause PTSD in Kids with Pancreatitis

Key takeaways: •   Medical procedures can be traumatic for children, and this trauma can cause “medical PTSD”– a condition called pediatric medical traumatic stress, or PMTS •   PMTS is being studied in people with chronic pancreatitis and other chronic illnesses •   If children suffer from PMTS, parents can help by finding psychologists experienced in chronic illness, keeping their doctors and social workers informed, and seeking care for themselves Addison Cuneo, MD, Clinical Fellow Pediatric Gastroenterology, Hepatology, and Nutrition University of California, San Francisco I see you. I see the struggle of chronic illness, I see the deeply intertwined web of psychological…
Omar Chioua
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News
November 17, 2020

Volunteers Needed for Pancreatitis Research Study

Volunteers Needed Precision Care Network is collecting nasal cells to support research focused on improving medical care for people who have been diagnosed with pancreatitis or are at high risk for developing pancreatitis. Donating nasal cells takes less than five minutes. Eligibility Must be 18 years or older and Have a pancreatitis diagnosis, or Be at high risk of developing pancreatitis Compensation You will receive $25 per collection for each nostril (up to $50.00) for your participation You may have the option to donate saliva Qualification To see if you may qualify, email research@precisioncn.org with the subject like, "Pancreatitis Research…
Sofia Garcia
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Stephen Pandol, MD, is Director of Basic and Translational Research at Cedars-Sinai Medical Center
Alcohol & PancreatitisAlcohol & PancreatitisBlogPatient ResourcesTopicsTopics
June 5, 2018

Pancreatitis and Alcohol: What’s the Real Connection?

I’ve been researching and treating chronic pancreatitis for decades, so I know firsthand what a complicated disease it is and how many unknowns remain. Answers are finally beginning to emerge, but the research is still very preliminary, underscoring how much more we need to learn. It has become increasingly clear that chronic pancreatitis (CP) is caused by multiple factors. Those factors vary from patient to patient and in how they interact with each other. Stephen Pandol, MD, is Director of Basic and Translational Research at Cedars-Sinai Medical Center and Professor of Medicine, University of California Los Angeles. His career has…
Dr. Stephen Pandol
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