Living with Kuru
A rare brain disease from a prion, found in one region of New Guinea and linked to a ritual practice that has stopped.
Understanding Kuru
It was mainly seen in adult females and children of both sexes. It begins with tremor and balance trouble, followed by muscle weakness and loss of bladder control. It is linked to ritual cannibalism and has become rare since the practice was stopped. In the brain, nerve cells are lost, mostly in the cerebellum.
Signs & symptoms
Symptoms vary from person to person. GARD's summary describes these features:
- Tremor
- Balance and coordination problems (ataxia)
- Muscle weakness
- Loss of bladder control
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 brain and nervous system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- 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
It is a prion disease. GARD says it is associated with ritual cannibalism, which has been discontinued.
Also known as: kuru encephalitis; kuru encephalopathy
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 Kuru.
Explore research for Kuru
Explore actively recruiting Kuru studies with HealthSpark.
Find actively recruiting studies for Kuru 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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