Living with Bilateral frontoparietal polymicrogyria
A rare brain condition in which the front and upper-middle brain has too many small folds, affecting learning, movement, and seizures.
Understanding Bilateral frontoparietal polymicrogyria
It affects the cerebral cortex, the outer surface of the brain, and is present from before birth or infancy. Signs typically include moderate to severe intellectual disability, developmental delay, seizures, unsteadiness (cerebellar ataxia), and eyes that are not aligned.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Intellectual disability
- Delays in development and movement
- Seizures
- Unsteady walking (ataxia)
- Eyes turning inward (esotropia)
- Trouble with language
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.
- 3Consider genetic testing
Changes in ADGRG1 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
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 the ADGRG1 gene (also called GPR56) cause some cases. It is autosomal recessive, which means a child inherits a changed copy of the gene from each parent.
Also known as: bfpp - bilateral frontoparietal polymicrogyria; cerebellar ataxia with neuronal migration defect; cortical dysplasia, complex, with other brain malformations 14a (bilateral frontoparietal)
Patient organizations
- PMG Awareness OrganizationBilateral frontoparietal polymicrogyria · United States
- Epilepsy FoundationEpilepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Bilateral frontoparietal polymicrogyria.
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