Living with Spinocerebellar ataxia type 19/22
A very rare inherited condition starting in adulthood with mild coordination problems, thinking changes and muscle jerks.
Understanding Spinocerebellar ataxia type 19/22
It causes mild poor coordination (ataxia), thinking and planning difficulty, sudden muscle jerks (myoclonus) and tremor while holding a posture. It starts in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Mild poor coordination (ataxia)
- Unsteady walk and balance trouble
- Shrinking of the cerebellum
- Trunk instability
- Loss of bladder control
- Changes in reflexes
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 KCND3 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 KCND3 gene. It is inherited in an autosomal dominant pattern, meaning one changed copy of the gene is enough.
Also known as: sca19; sca19/22; spinocerebellar ataxia 19; spinocerebellar ataxia 22; spinocerebellar ataxia type 19
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 19/22.
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