Living with Subcortical band heterotopia
A brain condition in which nerve cells stop in the wrong place before birth, often causing seizures.
Understanding Subcortical band heterotopia
Some neurons stop beneath the outer brain layer and form band-like clusters. Signs depend on the size of the bands and how much the outer brain layer is affected. They range from severe intellectual disability and early seizures to normal intelligence with later seizures. Some people have low muscle tone, loss of fine motor skills, or behavior problems. It is often found on brain imaging after seizures start, usually in the teen or early adult years.
Signs & symptoms
GARD doesn't list a separate symptom list. The summary describes:
- Seizures
- Intellectual disability (varies from none to severe)
- Low muscle tone
- Loss of fine motor skills
- Behavior problems
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
Changes in genes (variants) cause this condition. It can be inherited in an autosomal recessive or X-linked pattern. GARD doesn't list which gene here.
Also known as: 17-linked subcortical band heterotopia; band heterotopia; dc syndrome; dcx-related subcortical band heterotopia; double cortex syndrome; heco
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 Subcortical band heterotopia.
Explore research for Subcortical band heterotopia
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