Living with Spinocerebellar ataxia type 38
An inherited condition starting in adulthood with trouble keeping upright, walking and balancing, and eye movement problems.
Understanding Spinocerebellar ataxia type 38
It causes weakness in the abdominal and back muscles that makes staying upright hard (truncal ataxia), plus problems with walking and balance. People have involuntary eye movements when looking in a certain direction. Over time they may develop slurred speech, poor arm and leg coordination, double vision and nerve damage.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Poor coordination when walking
- Trouble staying upright (truncal ataxia)
- Jerky eye movements (nystagmus)
- Slurred speech (dysarthria)
- Nerve damage in the limbs
- 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
Specialists who may be involved include brain and nervous system specialists and genetic specialists.
- 3Consider genetic testing
Changes in ELOVL5 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 ELOVL5 gene. It is inherited in an autosomal dominant pattern, meaning one changed copy of the gene is enough.
Also known as: sca38
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 38.
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