Living with Early onset cerebellar ataxia with retained tendon reflexes
An inherited condition with slowly worsening balance and coordination problems, with brisk reflexes, starting from childhood to adulthood.
Understanding Early onset cerebellar ataxia with retained tendon reflexes
People develop progressive cerebellar ataxia, meaning trouble with balance and coordination that slowly gets worse. Reflexes are brisk, and some people have major loss of sensation. It begins between childhood and adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Slowly worsening balance and coordination problems
- Unsteady walk
- Trouble speaking (dysarthria)
- Rapid, involuntary eye movements (nystagmus)
- Brisk reflexes
- Trouble swallowing (dysphagia)
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 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 changes in a person's genes cause this condition. It is autosomal recessive, meaning a child inherits a changed copy of the gene from each parent.
Also known as: early-onset cerebellar ataxia with retained tendon reflexes; eoca; eoca - early onset cerebellar ataxia with retained tendon reflexes; eocarr; harding ataxia
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 Early onset cerebellar ataxia with retained tendon reflexes.
Explore research for Early onset cerebellar ataxia with retained tendon reflexes
Explore actively recruiting Early onset cerebellar ataxia with retained tendon reflexes studies with HealthSpark.
Find actively recruiting studies for Early onset cerebellar ataxia with retained tendon reflexes with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Early onset cerebellar ataxia with retained tendon reflexes studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Early onset cerebellar ataxia with retained tendon reflexes
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Early onset cerebellar ataxia with retained tendon reflexes experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.