Living with Bilateral frontal polymicrogyria
A rare brain condition in which the front of the brain forms too many small folds, affecting movement and learning.
Understanding Bilateral frontal polymicrogyria
It forms before birth. Signs can include delays in movement and language, stiffness and weakness on one side or in all four limbs, and mild to moderate intellectual disability. Seizures may occur.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Delayed speech and language
- Delays in overall development
- Mild to moderate intellectual disability
- Stiffness and weakness in all four limbs (spastic tetraparesis)
- Weakness on one side of the body
- Seizures
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
The cause of the frontal form is still not known. A related frontoparietal form is caused by changes in the GPR56 gene.
Patient organizations
- PMG Awareness OrganizationBilateral frontal polymicrogyria · United States
- Epilepsy FoundationEpilepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Bilateral frontal polymicrogyria.
Explore research for Bilateral frontal polymicrogyria
Explore actively recruiting Bilateral frontal polymicrogyria studies with HealthSpark.
Find actively recruiting studies for Bilateral frontal polymicrogyria 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 Bilateral frontal polymicrogyria 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 Bilateral frontal polymicrogyria
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 Bilateral frontal polymicrogyria 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.