Living with Epilepsy, familial focal, with variable foci 1
An inherited type of epilepsy in which seizures start in different parts of the brain.
Understanding Epilepsy, familial focal, with variable foci 1
Seizures start in different areas of the brain and may spread. Some people notice odd feelings (auras) or repeat movements without meaning to (automatisms). Others have seizures during sleep. Seizures usually start in the first or second decade of life, but can start later. Not everyone in a family has the same symptoms. Some people have differences in brain cortex cells called focal cortical dysplasia.
Signs & symptoms
Symptoms vary from person to person. GARD lists these as among the features:
- Seizures that start in one brain area and spread
- Auras (unusual sensations before a seizure)
- Repeated movements during seizures (automatisms)
- Seizures during sleep
- Intellectual disability in some people
- Autism spectrum features in some people
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 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
- 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
Changes in the DEPDC5 gene cause this condition. It is autosomal dominant, which means a single changed copy of the gene is enough to cause it.
Also known as: depdc5 epilepsy, familial focal, with variable foci; depdc5-related epilepsy; epilepsy, familial focal, with variable foci caused by mutation in depdc5; ffevf1
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 Epilepsy, familial focal, with variable foci 1.
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