Living with Isolated focal cortical dysplasia
A genetic brain condition with small areas of abnormal brain development that cause seizures that are hard to control.
Understanding Isolated focal cortical dysplasia
Nerve cells did not move to the right places while the brain formed. The affected areas can be different sizes and in any part of the cortex. It causes epilepsy that does not respond well to drugs, and this may lead to intellectual disability. People can also have behavior changes. Abnormal MRI findings are common. It can start at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Seizures
- Seizures that start in one part of the brain
- Seizures during sleep
- Behavior changes
- Mild intellectual disability
- Weakness on one side of the body
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
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: 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 Child Neurology Foundation 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
GARD says changes in genes (also called variants) cause this condition. It results from nerve cells moving abnormally during brain development.
Also known as: epilepsy due to fcd
Patient organizations
- Child Neurology FoundationIsolated focal cortical dysplasia · United States
- Epilepsy FoundationEpilepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Isolated focal cortical dysplasia.
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