Hemimegalencephaly is a rare malformation involving one side of the brain. It may occur alone or in association with other syndromes such as Proteus syndrome, tuberous sclerosis, linear sebaceous nevus syndrome, neurofibromatosis, Sturge-Weber syndrome, or Klippel-Trenaunay syndrome. Children with this disorder may have a large, asymmetrical head accompanied by seizures, partial paralysis, and impaired cognitive development. Because the seizures associated with hemimegalencephaly are difficult to treat with anticonvulsant medications, a surgery called hemispherectomy is often the most successful treatment. The cause of hemimegalencephaly is not fully understood, but involves a disturbance of cells early in development and likely involves genes involved in patterning and symmetry.
Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.
Nonprofit support and advocacy groups bring together patients, families, medical professionals, and researchers. These groups often raise awareness, provide support, and develop patient-centered information. Many are the driving force behind research for better treatments and possible cures. They can direct people to research, resources, and services. Many groups also have experts who serve as medical advisors. Visit their website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
Undiagnosed Day is April 29th
April 19, 2017
Cerebellar Development: Bench to Bedside 2006 International Conference
Thursday, November 9, 2006 -
Sunday, November 12, 2006
Location: Washington, DC
Description: This meeting addressed human disorders and animal models and focused mainly on mouse and zebrafish. Session topics included delineation of syndromes, gene identification, molecular analysis, prenatal diagnosis, cerebellar patterning, cell specification, neuronal migration, and genetic pathways.
Contact: Dr. Katrina Gwinn-Hardy(301) 496-5745
Co-funding Institute(s): National Institute of Neurological Disorders and Stroke
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My granddaughter has hemimegalencephaly and is suffering with seizures that thus far are not being controlled with any medications. We have been told the next step is to have brain surgery. Can you provide me with information about this? See answer
My grandson was recently diagnosed with hemimegalencephaly. He's currently on-track developmentally. Are there degrees of severity with this condition? Where can we find the best information or an expert we could talk to? See answer