Living with Juvenile polyposis syndrome
An inherited condition with many noncancerous growths called polyps in the digestive tract, usually the colon.
Understanding Juvenile polyposis syndrome
People typically develop polyps before age 20. "Juvenile" refers to the type of tissue in the polyp, not the person's age. Polyps are usually in the colon, and the number ranges from a few to hundreds. They may cause bleeding, anemia, belly pain, and diarrhea. About 15 percent of people have other differences, such as intestinal malrotation, heart or brain differences, cleft palate, or extra fingers or toes. It can appear at a variety of ages.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Juvenile polyps in the colon and rectum
- Polyps in the small intestine
- Belly pain
- Bleeding from the digestive tract
- Anemia (low red blood cells)
- Diarrhea
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 cancer specialists, digestive system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Cancer specialists (oncologists); Digestive system specialists (gastroenterologists); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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, meaning one changed copy of the gene is enough.
Also known as: jip; jps; juvenile gastrointestinal polyposis; juvenile intestinal polyposis; juvenile multiple polyps syndrome; juvenile polyposis
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Juvenile polyposis syndrome.
Explore research for Juvenile polyposis syndrome
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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