Living with Oculomotor apraxia - Cogan type
An eye condition in which side-to-side eye movements are impaired, so people turn their heads to follow objects.
Understanding Oculomotor apraxia - Cogan type
Most people have to turn their head to follow things to the side. Up-and-down eye movements are usually normal. It can come with mild developmental delay and speech difficulties, and sometimes with kidney problems and an underdeveloped part of the cerebellum. When other symptoms occur, it can be a sign of conditions like nephronophthisis or Joubert syndrome. GARD lists childhood as the usual onset.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Trouble with side-to-side eye movements (oculomotor apraxia)
- Jerky head movements to follow objects
- Trouble coordinating movement (ataxia)
- Delayed speech and language development
- Delayed motor skills
- Learning disability
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 eye disease specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Joubert Syndrome & Related Disorders 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 the cause is not known in many cases. Cases support an autosomal recessive pattern, where a child inherits a changed copy of the gene from each parent.
Also known as: congenital saccade initiation failure; ocular motor apraxia cogan type; ocular motor apraxia, cogan type; oculomotor apraxia, cogan type; oculomotor apraxia, congenital, cogan-type; saccade initiation failure, congenital
Patient organizations
- Joubert Syndrome & Related Disorders FoundationOculomotor apraxia - Cogan type · United States
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