Living with Bilateral polymicrogyria
A rare brain condition with too many small folds on the surface of the brain on both sides, affecting development and causing seizures.
Understanding Bilateral polymicrogyria
It comes from abnormal movement of nerve cells during brain development. It can show up as developmental delay, intellectual disability, seizures, and other nervous system problems. It may stand alone, be part of a genetic syndrome, or be linked to cytomegalovirus infection around birth.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Seizures
- Delays in overall development
- Delayed speech and language
- Intellectual disability
- Movement and balance problems
- Eyes turning inward (esotropia)
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, genetic specialists and seizure and epilepsy specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
PMG Awareness Organization and Epilepsy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists); Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: PMG Awareness Organization, Epilepsy 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 PMG Awareness Organization and other patient organizations
- 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 genes cause this condition. It can be autosomal recessive or X-linked. It may also be linked to cytomegalovirus infection around birth.
Patient organizations
- PMG Awareness OrganizationBilateral polymicrogyria · United States
- Epilepsy FoundationEpilepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Bilateral polymicrogyria.
Explore research for Bilateral polymicrogyria
Explore actively recruiting Bilateral polymicrogyria studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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