Living with Spinocerebellar ataxia type 36
An inherited condition starting in mid-adulthood with worsening balance problems, tongue and muscle wasting, and sometimes hearing loss.
Understanding Spinocerebellar ataxia type 36
People first have trouble with coordination and balance (ataxia), and often have strong reflexes and slurred speech. They usually develop twitching and wasting of the tongue, which can make swallowing liquids hard. Later, muscles in the legs, forearms and hands may waste. Some have eye muscle problems or hearing loss. Brain imaging shows shrinkage, especially of the cerebellum.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Poor balance and coordination (ataxia)
- Slurred speech (dysarthria)
- Twitching and wasting of the tongue
- Muscle wasting in the limbs
- Slow eye movements
- Hearing loss
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 NOP56 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 lists changes in the NOP56 gene. It is inherited in an autosomal dominant pattern, meaning one changed copy of the gene is enough.
Also known as: asidan; asidan ataxia; costa de morte ataxia; sca36; spinocerebellar ataxia 36; spinocerebellar ataxia type36
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 36.
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