Living with Rolandic epilepsy-speech dyspraxia syndrome
A rare genetic epilepsy with childhood seizures and speech and language problems, sometimes with intellectual disability.
Understanding Rolandic epilepsy-speech dyspraxia syndrome
Speech problems range from trouble forming words (dyspraxia) and language delay to subtle problems with conversation. Seizures are mostly focal and begin in childhood, sometimes with an aura (warning feeling). Mild to severe intellectual disability may also occur. It can start before birth, at birth, or in infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Seizures that start in one area of the brain
- Delayed speech and language
- Trouble planning speech movements (speech apraxia)
- Intellectual disability
- Drooling
- Seizures that spread to both sides of the brain
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
GARD lists autosomal dominant and X-linked inheritance. It does not name a gene in this record.
Also known as: rolandic epilepsy, speech dyspraxia syndrome
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 Rolandic epilepsy-speech dyspraxia syndrome.
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