Living with Hemimegalencephaly
A rare brain condition in which one side of the brain is larger than the other, often with seizures.
Understanding Hemimegalencephaly
It can occur alone or with other syndromes. Children may have a large, uneven head, seizures, weakness on one side, and delays in learning and development. It begins in infancy. GARD says it involves a disturbance of cells early in development.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Seizures
- Delays in development
- Uneven skull shape
- Extra folds in the brain (polymicrogyria)
- Enlarged fluid spaces in the brain
- Seizures affecting one area 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, hormone 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); Hormone specialists (endocrinologists); 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 Klippel-Trenaunay Support Group 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 the cause is not fully understood. It involves a disturbance of cells early in development and likely involves genes that guide patterning and symmetry.
Also known as: unilateral megalencephaly
Patient organizations
- Klippel-Trenaunay Support GroupHemimegalencephaly · United States
- The Hemispherectomy FoundationHemimegalencephaly · United States
- Epilepsy FoundationEpilepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Hemimegalencephaly.
Explore research for Hemimegalencephaly
Explore actively recruiting Hemimegalencephaly studies with HealthSpark.
Find actively recruiting studies for Hemimegalencephaly 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
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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