Living with Spinocerebellar ataxia 9
A rare inherited ataxia that causes slowly worsening balance and coordination problems.
Understanding Spinocerebellar ataxia 9
People often have an unsteady walk and may slowly lose the ability to walk smoothly. They may have poor hand coordination, making tasks like writing or buttoning clothes hard, and slurred speech. Eye movements can become jerky. Many people develop shrinking of the cerebellum, the brain area that coordinates movement.
Signs & symptoms
GARD doesn't list a separate symptom list for this condition. Based on its summary, symptoms include:
- Unsteady walk
- Poor hand coordination
- Slurred or unclear speech
- Jerky eye movements
- Shrinking of the cerebellum
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
National Ataxia Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: National Ataxia Foundation
- 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 National Ataxia Foundation
- 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 doesn't list a gene. It is inherited in an autosomal dominant pattern, meaning one changed copy of a gene is enough.
Also known as: cerebellar ataxia type 9; sca9; spinocerebellar ataxia type 9
Patient organizations
- National Ataxia FoundationSpinocerebellar ataxia 9 · United States
You are more than your diagnosis
Perspectives from people navigating life with Spinocerebellar ataxia 9.
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