Living with Cayman type cerebellar ataxia
A rare inherited condition that affects balance, coordination, and development from infancy.
Understanding Cayman type cerebellar ataxia
It starts at birth or in infancy, with low muscle tone and delayed development. It was described in an isolated population on Grand Cayman Island. Brain imaging may show a small cerebellum.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Low muscle tone from birth (hypotonia)
- Delayed development
- Unsteady walking (gait ataxia)
- Poor trunk control (truncal ataxia)
- Shaky movements when reaching (intention tremor)
- Eye shaking (nystagmus) and slurred speech
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 ATCAY 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
Changes in the ATCAY gene cause this condition. It is inherited in an autosomal recessive way, so a child inherits a changed copy of the gene from each parent.
Also known as: ataxia, cerebellar, cayman type; cayman ataxia; cayman cerebellar ataxia; cerebellar ataxia cayman type; cerebellar ataxia, cayman type
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 Cayman type cerebellar ataxia.
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