Living with Childhood-onset benign chorea with striatal involvement
A rare genetic movement condition beginning in childhood, with jerky, dance-like movements that changes little over time.
Understanding Childhood-onset benign chorea with striatal involvement
Chorea varies in how severe it is. Brain MRI shows changes on both sides in a brain area called the striatum. The condition progresses very little. Thinking skills are kept in most people, though mild cognitive delay has been reported.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Chorea (involuntary, dance-like movements)
- Changes in the striatum seen on brain MRI
- Anxiety, in some
- Parkinson-like symptoms that respond to medicine, in some
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 and genetic specialists.
- 3Consider genetic testing
Changes in PDE10A are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); 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 the PDE10A gene cause this condition. It is autosomal dominant, so one changed copy of the gene can be enough.
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 Childhood-onset benign chorea with striatal involvement.
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