Living with Juvenile Huntington disease
A less common form of Huntington disease that begins in childhood or teen years, causing movement, thinking, and mood changes.
Understanding Juvenile Huntington disease
Brain cells in certain areas break down over time. This causes uncontrolled movements, loss of thinking skills, and emotional changes. Onset is before age 20, and it makes up 5 to 10 percent of Huntington disease cases. Children most often inherit the change from their fathers, though sometimes from their mothers.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Uncontrolled movements (chorea)
- Stiffness (rigidity) and slow movement
- Loss of thinking skills (dementia)
- Behavior changes and irritability
- Depression
- Seizures
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, eye disease specialists and genetic specialists.
- 3Consider genetic testing
Changes in HTT are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Huntington's Disease Society of America may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Huntington's Disease Society of America
- 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 Huntington's Disease Society of America 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
Changes in the HTT gene cause this condition, in the form of a repeated stretch of DNA (a trinucleotide repeat). It is autosomal dominant, meaning one changed copy of the gene is enough.
Also known as: jhd; juvenile huntington chorea; juvenile onset huntington disease; juvenile onset huntington's disease
Patient organizations
- Huntington's Disease Society of AmericaJuvenile Huntington disease · United States
- Huntington's Disease Youth OrganizationJuvenile Huntington disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Juvenile Huntington disease.
Explore research for Juvenile Huntington disease
Explore actively recruiting Juvenile Huntington disease studies with HealthSpark.
Find actively recruiting studies for Juvenile Huntington disease with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
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- 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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