Living with Bilateral parasagittal parieto-occipital polymicrogyria
A rare brain condition with too many small folds in the back and upper part of the brain on both sides, affecting development and causing seizures.
Understanding Bilateral parasagittal parieto-occipital polymicrogyria
Polymicrogyria can affect part or all of the brain. Bilateral forms (both sides) tend to cause more severe problems. Signs can include seizures, delayed development, crossed eyes, and speech and swallowing problems.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Seizures
- Delays in overall development
- Delayed speech and language
- Delayed movement skills
- Intellectual disability
- Behavior differences
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 FIG4 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 FIG4 gene cause this condition. It is autosomal recessive, which means a child inherits a changed copy of the gene from each parent.
Also known as: polymicrogyria, bilateral temporooccipital
Patient organizations
- PMG Awareness OrganizationBilateral parasagittal parieto-occipital polymicrogyria · United States
- Epilepsy FoundationEpilepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Bilateral parasagittal parieto-occipital polymicrogyria.
Explore research for Bilateral parasagittal parieto-occipital polymicrogyria
Explore actively recruiting Bilateral parasagittal parieto-occipital polymicrogyria studies with HealthSpark.
Find actively recruiting studies for Bilateral parasagittal parieto-occipital 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 parasagittal parieto-occipital 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 parasagittal parieto-occipital 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 parasagittal parieto-occipital 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.