Living with Episodic kinesigenic dyskinesia
An inherited condition with short episodes of involuntary movements triggered by sudden motion.
Understanding Episodic kinesigenic dyskinesia
Movements can be jerking, shaking, slow muscle tightening, or writhing, and range from mild to severe. Triggers include standing up quickly or being startled. People stay awake and have no symptoms between episodes. Episodes usually first occur in childhood or adolescence and last under five minutes. They often happen less with age.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Involuntary movements (dyskinesia)
- Slow, prolonged muscle tightening (dystonia)
- Small, fast, dance-like movements (chorea)
- Writhing movements (athetosis)
- A tingling or crawling feeling before an episode (aura)
- Seizures in some people
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 and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Dystonia Medical Research Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Dystonia Medical Research 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 Dystonia Medical Research 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 cause this condition. It is autosomal dominant, which means a change in one copy of the gene can cause it. GARD does not name the gene.
Also known as: ekd; familial paroxysmal kinesigenic dyskinesia; familial pkd; paroxysmal kinesigenic choreathetosis; paroxysmal kinesigenic choreoathetosis; paroxysmal kinesigenic dyskinesia
Patient organizations
- Dystonia Medical Research FoundationDystonia · 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 Episodic kinesigenic dyskinesia.
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