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Care Framework
April 27, 2021

Care Framework

Last year, the American College of Gastroenterology (ACG) published clinical guidelines to provide an evidence-based practical approach to the diagnosis and management of chronic pancreatitis for the general gastroenterologist. We, at Mission: Cure, commend the efforts of the authors and believe that these guidelines are an important step forward for pancreatitis patients who continue to seek a diagnosis and treatment plan while suffering with pain, hopelessness, and poor outcomes.  (more…)
Avi Khullar
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Patient Stories
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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Exocrine Pancreatic InsufficiencyExocrine Pancreatic InsufficiencyPatient Stories
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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Jobs
March 24, 2021

Summer 2021 Volunteer Internship

About Mission: Cure Mission: Cure was founded in 2017 to find effective treatments and, ultimately, a cure for pancreatitis-- an extremely painful, degenerative and costly disease. Led by Megan Golden, a leader in innovative, outcome-based financing such as “Social Impact Bonds,” and Linda Martin, a veteran technology entrepreneur, Mission: Cure is pioneering a new funding model that creates new incentives for patient outcomes. Innovation in curing disease is even more needed in the post-COVID-19 world. Job Description Position Summary Mission: Cure seeks student interns to help with this important initiative. We are looking for hard workers and creative thinkers interested…
Sofia Garcia
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Exocrine 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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December 18, 2020

Exceptional Pancreatitis Care Providers

Exceptional Care Award During our 2020 Moments of Hope party, we asked patients to submit the names of care providers that gave them a Moment of Hope during their disease journey. Pancreatitis is a commonly misunderstood disease, even in the medical community. New science has revealed that chronic pancreatitis is not caused by alcoholism, but rather a combination of environmental and genetic factors-- yet the stigma still persists. The lack of understanding of the disease often hinders pancreatitis patients from receiving the best care. (more…)
Sofia Garcia
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December 11, 2020

New Pancreatic Cancer Screening Guidelines: What Pancreatitis Patients Need to Know

Key Takeaways Pancreatic cancer is very rare. But it is also very deadly because by the time it is discovered, it often has already started to spread to other organs. People with pancreatitis and a PRSS1 genetic mutation (hereditary pancreatitis) should be screened every year for pancreatic cancer starting at age 40. Screening involves and MRI and a CT Scan. Annual pancreatic cancer screening is not currently recommended for pancreatitis patients with SPINK1 p. N34S, CFTR, CTRC, CPA1 and CEL genetic mutations unless they have two blood relatives with pancreatic cancer. Stopping smoking, a healthy diet, and exercise can help…
Sofia Garcia
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BlogBlogBlogBlogBlogBlogBlogBlogBlogPediatric 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
October 15, 2020

Patient-Centered Care Models for Pancreatitis Patients

Avi Khullar, Director of Patient Centered Care What are the experiences of individuals suffering from chronic pancreatitis and acute recurrent pancreatitis as they seek care and support? How does this condition change the way that they go about their daily lives? If pancreatic patients could reimagine their ideal care experience, what would that look like? These were some of the questions that we sought to answer as we spoke with patients and caregivers of those suffering from chronic pancreatitis and recurrent acute pancreatitis. (more…)
Sofia Garcia
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September 4, 2020

ICD Codes Linking Pancreatitis to Alcohol Harm Patients. Let’s Change Them.

Key Takeaways Currently, ICD Codes for pancreatitis associate the disease with alcohol consumption, which is scientifically inaccurate. Physicians use a system called ICD-10 codes to identify diagnoses and procedures in patient medical records and for insurance reimbursement. Chronic Pancreatitis has been inaccurately thought to be caused by alcohol. This is now known to be inaccurate, but is still reflected in ICD codes. That needs correcting. Inaccurate coding harms patients, causing incorrect diagnosis, delayed treatment, bias and stigma. Mission: Cure has submitted a proposal to the CDC to delete the code for Alcoholic Chronic Pancreatitis and replace it with scientifically relevant…
Sofia Garcia
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