Living with Familial focal epilepsy with variable foci
An uncommon inherited epilepsy in which seizures start in one part of the brain, and the part can differ between relatives.
Understanding Familial focal epilepsy with variable foci
Seizures can start at any age from infancy to adulthood. They begin in one region of the brain, often the temporal or frontal lobe. In some people the seizure spreads to the whole brain. Relatives may have seizures starting in different brain areas. Some people also have a brain difference called focal cortical dysplasia, and seizures may be hard to control with medicine. Most people have normal intelligence.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Seizures that start in one part of the brain (focal)
- Grand mal seizures (tonic-clonic)
- Seizures during sleep
- Behavior problems in some people
- Learning or thinking difficulties in some people
- A feeling of deja vu before a seizure
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 Epilepsy Foundation
- 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
This condition is autosomal dominant, which means a change in one copy of the gene can cause it. GARD does not name the gene here.
Also known as: epilepsy, familial focal, with variable foci; familial partial epilepsy with variable foci; ffevf; ffevf - familial focal epilepsy with variable foci; fpevf
Patient organizations
- Epilepsy FoundationEpilepsy · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial focal epilepsy with variable foci.
Explore research for Familial focal epilepsy with variable foci
Explore actively recruiting Familial focal epilepsy with variable foci studies with HealthSpark.
Find actively recruiting studies for Familial focal epilepsy with variable foci 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 Familial focal epilepsy with variable foci 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 Familial focal epilepsy with variable foci
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 Familial focal epilepsy with variable foci 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.