Living with Spinocerebellar ataxia type 15/16
An inherited condition with slowly worsening balance, walking and limb coordination problems, plus tremor.
Understanding Spinocerebellar ataxia type 15/16
It often comes with eye movement problems, and with difficulty with balance, speech and swallowing. Tremor can occur. Diagnosis is based on clinical history, a physical exam, genetic testing, and ruling out similar diseases. Symptoms begin in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Unsteady walk and limb ataxia
- Tremor in the arms or head
- Strong reflexes
- Shrinking of the cerebellum
- Eye movement problems
- Speech and swallowing trouble
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 ITPR1 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
National Ataxia Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- 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 says it is caused by changes in the ITPR1 gene. It is inherited in an autosomal dominant pattern, meaning one changed copy of the gene is enough.
Also known as: sca15; sca15/16; scar16; spinocerebellar ataxia type 15; spinocerebellar ataxia type 16
Patient organizations
- National Ataxia FoundationAtaxia · United States
Broader rare-disease groups
- 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 Spinocerebellar ataxia type 15/16.
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