Living with Myoclonic epilepsy in non-progressive encephalopathies
A rare form of epilepsy in infants and young children with long-lasting episodes of muscle jerks.
Understanding Myoclonic epilepsy in non-progressive encephalopathies
It involves repeated, long-lasting episodes of muscle jerks (myoclonic status) in children whose brain condition (encephalopathy) does not get worse over time. Movement, thinking, or behavior problems can come and go. GARD lists onset in infancy and childhood.
Signs & symptoms
GARD doesn't list a symptom list, but the summary describes these features:
- Repeated, long-lasting muscle jerks
- Seizures
- Temporary movement problems
- Temporary thinking problems
- Temporary behavior changes
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 says changes in genes cause this condition. It doesn't list a specific gene or how it is inherited.
Also known as: myoclonic epilepsy in non-progressive encephalopathy; myoclonic status in non-progressive encephalopathies; myoclonus epilepsy in non-progressive encephalopathies
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 Myoclonic epilepsy in non-progressive encephalopathies.
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