Living with Hereditary pancreatitis
An inherited condition with repeated bouts of pancreas inflammation, starting in childhood or the teen years.
Understanding Hereditary pancreatitis
The pancreas makes digestive enzymes and insulin. Symptoms usually start in late childhood with an acute attack of belly pain, fever, nausea, or vomiting lasting one to three days. Repeated attacks can lead to chronic pancreatitis, usually by early adulthood, with ongoing pain, gas, and bloating. Over time scarring can reduce pancreas function.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Belly pain
- Repeated pancreas inflammation (pancreatitis)
- Nausea and vomiting
- Fever
- Gas and bloating
- Fatty stools in later disease
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include digestive system specialists, genetic specialists and hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
National Pancreas Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Digestive system specialists (gastroenterologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: National Pancreas Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with National Pancreas Foundation
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says changes in genes (also called variants) cause this condition. It is autosomal dominant, so one changed copy of the gene is enough.
Also known as: familial chronic pancreatitis; hereditary chronic pancreatitis; pctt
Patient organizations
- National Pancreas FoundationHereditary pancreatitis · United States
You are more than your diagnosis
Perspectives from people navigating life with Hereditary pancreatitis.
Explore research for Hereditary pancreatitis
Explore actively recruiting Hereditary pancreatitis studies with HealthSpark.
Find actively recruiting studies for Hereditary pancreatitis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Hereditary pancreatitis studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Hereditary pancreatitis
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Hereditary pancreatitis experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.