Living with Cronkhite-Canada syndrome
A rare gut condition with many colon polyps, hair loss, nail changes, and darkening skin, usually in adults.
Understanding Cronkhite-Canada syndrome
People can have unhealthy-looking nails, hair loss (alopecia), darkening skin on the hands, arms, neck, and face, diarrhea, weight loss, stomach pain, and swelling in the arms and legs (peripheral edema). It usually starts in adulthood. GARD says the cause is not known.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Many polyps in the intestine
- Diarrhea
- Hair loss (alopecia)
- Nail changes
- Darkened skin
- Poor absorption of nutrients and weight loss
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, genetic specialists and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Global Autoimmune Institute and National Foundation for Ectodermal Dysplasias may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Digestive system specialists (gastroenterologists); Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Global Autoimmune Institute, National Foundation for Ectodermal Dysplasias
- 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 Global Autoimmune Institute and other patient organizations
- 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 the cause is not known. It doesn't name a gene.
Also known as: canada-cronkhite syndrome; ccs - cronkhite-canada syndrome; cronkhite-canada polyposis; gastric cronkhite canada polyposis; gastrointestinal multiple polyposis syndrome; gastrointestinal polyposis-ectodermal changes syndrome
Patient organizations
- Global Autoimmune InstituteCronkhite-Canada syndrome · United States
- AGA GI Patient CenterCronkhite-Canada syndrome · United States
- National Foundation for Ectodermal DysplasiasEctodermal dysplasias · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Cronkhite-Canada syndrome.
Explore research for Cronkhite-Canada syndrome
Explore actively recruiting Cronkhite-Canada syndrome studies with HealthSpark.
Find actively recruiting studies for Cronkhite-Canada syndrome 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
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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