Living with Neuroacanthocytosis
A group of inherited conditions with spiky red blood cells and nervous system problems, especially movement disorders.
Understanding Neuroacanthocytosis
Age at onset, severity, and physical signs depend on the type. Symptoms usually include chorea (involuntary, dance-like movements), movements of the face and tongue that can't be controlled, memory and thinking changes, muscle weakness, seizures, and behavior or personality changes.
Signs & symptoms
GARD lists these symptoms as usual:
- Dance-like movements (chorea)
- Face and tongue movements that can't be controlled
- Slowly worsening memory and thinking
- Muscle weakness
- Seizures
- Behavior or personality changes
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.
- 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); 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 cause this condition. The gene and inheritance pattern differ for each type.
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 Neuroacanthocytosis.
Explore research for Neuroacanthocytosis
Explore actively recruiting Neuroacanthocytosis studies with HealthSpark.
Find actively recruiting studies for Neuroacanthocytosis 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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