Patient Videos

Module 1: Understanding Pancreatitis

What did you know about the pancreas before and after your diagnosis?
Patients with diseases of the pancreas discuss what they know about the pancreas now and prior to being diagnosed with their condition.
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What support have you found helpful?
Patients talk about how they have gained support and their experiences in living with diseases of the pancreas. Proactive involvement, renewed outlooks, and positive reflections are some of the silver linings they share in this video.
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What were your symptoms of acute pancreatitis?
Patients with acute pancreatitis describe the symptoms they experienced that led them to their diagnosis. They also describe the sudden and intense pain that they experienced, and discuss when they realized that their symptoms were serious.
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How was your acute pancreatitis diagnosed?
Patients with acute pancreatitis discuss how their diagnoses were made, including the tests they had to undergo and what they experienced during those tests.
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How do you explain your acute pancreatitis to your family and friends?
Patients with acute pancreatitis talk about their experiences of telling friends and family about their disease. They discuss their struggle with being comfortable enough to discuss the details of their condition. By sharing their stories, they are becoming advocates for the disease.
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Were you symptom free after your first attack of acute pancreatitis?
Patients discuss their experiences following their acute pancreatitis attack.
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What were your symptoms of chronic pancreatitis? How was it diagnosed?
Patients with chronic pancreatitis discuss the symptoms they experienced that led them to their diagnosis. They also discuss the importance of getting checked if something feels wrong – some patients had symptoms that were initially dismissed.
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How do you explain your chronic pancreatitis to family and friends?
Patients with chronic pancreatitis talk about their experiences of telling friends and family about their disease. They discuss their struggle with being comfortable enough to discuss the details of their condition. By sharing their stories, they are becoming advocates for the disease.
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What were your symptoms of EPI? How was it diagnosed?
Patients with acute pancreatitis describe the symptoms they experienced that led them to their diagnosis of EPI.
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How is your EPI treated?
Patients discuss their personal experiences and treatment plans for EPI.
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Module 2: Management and Treatment of Pancreatitis

How is your acute pancreatitis treated?
Patients discuss their personal experiences of being treated for acute pancreatitis. These experiences include a patient who required surgery to gain symptom relief, and a patient who managed symptoms by controlling intake of food and fluids until the pain subsided.
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What was the recovery process following your acute pancreatitis attack?
Patients discuss their recovery process following an attack of acute pancreatitis. The patients share how modifications to their diet and overall lifestyle were adopted in response.
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After an episode of acute pancreatitis, what changes did you make to your diet?
Patients discuss how their diet has changed following their recovery from an acute episode of pancreatitis - such as understanding the importance of avoiding high-fat foods.
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How is your chronic pancreatitis managed and treated?
Patients discuss their personal experiences and treatment plans for chronic pancreatitis. The patients discuss experiences related to their diet, lifestyle, pain medications, and surgeries.
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What role does medication play in your life?
Patients with chronic pancreatitis discuss pancreas enzyme replacement therapy (PERT), dietary supplements, and pain medication, including when they had to start these, and how they fit the pill schedule into their routines.
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How did your chronic pancreatitis progress? What lifestyle changes did you make?
Patients discuss their disease progression, as well as the lifestyle changes that need to be made following diagnosis.
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What nutritional changes did you make after your diagnosis of chronic pancreatitis?
Patients discuss the nutritional changes that need to be made following the diagnosis of chronic pancreatitis.
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Module 5: Nutrition and PERT

What EPI symptoms did you experience? How was your EPI diagnosed?
Patients with acute pancreatitis describe the symptoms they experienced that led them to their diagnosis of EPI.
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What is your experience with pancreatic enzymes?
Patients discuss their personal experiences and treatment plans for EPI.
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Module 8: Pancreatitis in Kids and Teens

Module 9: Familial Chylomicronemia Syndrome

When did you find out you had Familial Chylomicronemia Syndrome (FCS)? How was it diagnosed?
Nicole describes the symptoms she experienced (including numerous attacks of pancreatitis) and the long process she went through leading to her diagnosis of Familial Chylomicronemia Syndrome (FCS). After learning she had high blood triglyceride levels, as well as undergoing genetic testing, she was able to confirm that she had this rare condition.
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Do any of your family members have FCS?
Nicole describes how none of her family members that she knows of has ever had Familial Chylomicronemia Syndrome (FCS), which is a genetic condition. Some members of her family have had a history of heart-related conditions, diabetes, and triglyceride issues, but the technology for diagnosing FCS was not available to them in the past.
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How often do you see your doctor about your FCS? What discussions do you have?
Nicole discusses how she is supported by a team of specialists and nurses who help her on a weekly basis to monitor her condition. She explains how her team works together to provide the information and care she needs to effectively manage her FCS.
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What foods and diets do you avoid for your FCS? What advice do you have for others?
Nicole explains that with the help of a registered dietician, she was able to put together a suitable diet plan for eating very healthy, well-balanced, lower-calorie meals with very minimal amounts of fat (less than 10 grams a day). Other than nutrition, Nicole says that staying hydrated is also very important. Although it is challenging to have a restricted diet, Nicole is grateful to have found a routine that allows her to eat healthily.
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What self-management and lifestyle practices do you follow for your FCS?
Nicole describes how managing FCS does take some effort, but it’s not hard. She gets her triglyceride levels monitored weekly, stays in constant communication with her healthcare team, and maintains a nutritious, well-balanced diet. Nicole says it’s essential to take the time to care for yourself – physically, emotionally, and spiritually.
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Do you exercise as part of your routine for managing FCS?
Nicole describes how she incorporates exercise into her routine for managing FCS. She recommends exercise that includes interacting with other people, to keeps things much more fun. Her key message is to just do something and to not let feeling bad stop you from enjoying what you like doing.
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What are the biggest challenges you face living with FCS?
Nicole shares her challenges of living with FCS, such as initially not knowing what was affecting her, difficulty finding doctors who could help, and dealing with the associated emotional burdens. She advocates the need for greater awareness about FCS in the healthcare disciplines while also recommending that treatment protocols should be adjusted for patients with pancreatitis. With her FCS currently well managed, Nicole is focusing on enjoying life, advocating for others, and working to spread greater awareness about FCS.
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What resources do you find useful for managing your FCS?
Nicole talks about the resources she finds helpful for understanding and managing FCS, namely the FCS Foundation website and the National Pancreas Foundation websites which provide a wealth of information about the pancreas and how to manage different scenarios of living with FCS. Nicole explains that each of these resources was very effective for increasing her own awareness and knowledge.
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What words of wisdom do you have for other persons with FCS?
Nicole shares that it is important to recognize that there is hope and that FCS is manageable. She emphasizes the importance of educating yourself, advocating for yourself, and listening to yourself – all of which will help you through your experience with FCS. There may be roadblocks, so try your best to move past them until you find the support you need.
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When did you find out you had Familial Chylomicronemia Syndrome (FCS)? How was it diagnosed?
Charles describes the long and uncertain process he went through leading up to his diagnosis of Familial Chylomicronemia Syndrome (FCS). After an attack of acute pancreatitis over a decade ago, he spent years in and out of the hospital due to pancreatitis. Blood tests revealed he had high triglyceride levels, but his condition remained undiagnosed. Despite strict diet changes and other efforts to stay healthy, his triglyceride levels remained abnormally high. During a more recent hospital visit, a different blood test was ordered and his diagnosis of FCS was confirmed.
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Do any of your family members have FCS?
Charles describes how none of his family members have Familial Chylomicronemia Syndrome (FCS), which is a genetic condition. His grandparents had some symptoms that overlapped with symptoms of FCS – particularly high triglycerides. However, since the technology for diagnosing FCS had not yet been developed during his grandparent’s time, he is unable to trace how he came to have FCS. Despite no one else in his family having FCS, he encourages family members to get tested if they experience any of the symptoms.
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How often do you see your doctor about your FCS? What discussions do you have?
Charles discusses how he is supported by his lipidologist and his endocrinologist, each of whom he sees every 2 to 3 months. He explains how his team of specialists monitor his blood work and provide a health plan to effectively manage his FCS. His blood triglyceride levels, emotional well-being, diet, and physical activity are usual topics of discussion.
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What foods and diets do you avoid for your FCS? What advice do you have for others?
Charles emphasizes that the number one thing to avoid if you have FCS is fat (no more than 10 grams of fat per day). He acknowledges that this can be very restrictive, but it is not impossible. Charles follows a plant-based diet with as little fat as possible and suggests using MCT oil for mixing and cooking vegetables. With the help of a dietitian, Charles has found a diet plan that allows him to eat a healthy, well-balanced diet with very minimal amounts of fat.
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What self-management and lifestyle practices do you follow for your FCS?
Charles describes some of the ways he manages the physical and emotional aspects of living with Familial Chylomicronemia Syndrome (FCS).  He felt lonely and emotionally-detached when he was first diagnosed. By changing his mindset and staying connected with other people with FCS, he felt encouraged to move forward and do better. Online resources and the FCS patient communities on social media have helped him overcome some of the isolating aspects of his condition. Charles also talks about adopting a disciplined approach to diet and physical activity to stay as healthy as possible. Lastly, he recommends speaking with your doctor about participating in clinical trials.
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Do you exercise as part of your routine for managing FCS?
Charles describes how he incorporates exercise into his routine for managing Familial Chylomicronemia Syndrome (FCS). He understands that some days will be more tiring than others but to keep pushing forward if you can. His key message is that exercise is essential to maintaining your physical and emotional health. Charles recommends getting outdoors even just for some fresh air, which can be very beneficial and therapeutic.
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What are the biggest challenges you face living with FCS?
Charles shares his challenges of living with FCS,including following a restrictive diet, the feeling of being a burden to caregivers, the financial burden of having such a rare disease, and the uncertainty and fear of not knowing when another attack of pancreatitis might happen. Despite these challenges, Charles says that receiving support from caregivers and others with FCS has been very encouraging. He describes how his quality of life has improved because of his primary health plan and research study participation.
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What resources do you find useful for managing your FCS?
Charles talks about the resources he finds helpful for understanding and managing FCS. He recommends the FCS Foundation website as a great resource for someone newly diagnosed. He uses the Living with FCS Facebook group to connect to other persons with FCS. Charles also recommends the National Pancreas Foundation websites which provide a wealth of information on diseases of the pancreas and FCS, including a library of animations, videos, and patient interviews that share relatable experiences.
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