Living with Hyperkalemic periodic paralysis
A genetic condition with episodes of muscle weakness or paralysis, usually starting in infancy or early childhood.
Understanding Hyperkalemic periodic paralysis
Episodes usually involve a temporary inability to move muscles in the arms and legs. They tend to become more frequent until mid-adulthood, then happen less often for many people. Triggers include rest after exercise, potassium-rich foods such as bananas and potatoes, stress, fatigue, alcohol, pregnancy, hot or cold temperatures, some medicines, and fasting. Strength usually returns between attacks, but mild stiffness may stay.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Episodes of limp muscle weakness
- Muscle stiffness (myotonia)
- Muscle aches
- Muscle twitches
- Reduced tendon reflexes
- Walking difficulty
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.
- 3Consider genetic testing
Changes in SCN4A are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Muscular Dystrophy Association 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: Muscular Dystrophy Association
- 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 Muscular Dystrophy Association and other patient organizations
- 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 the SCN4A gene cause this condition. It is autosomal dominant, meaning one changed copy of the gene can be enough to cause it.
Also known as: adynamia episodica hereditaria; adynamia episodica hereditaria with or without myotonia; familial hyperkalemic periodic paralysis; familial hyperkalemic periodic paralysis (disorder) [ambiguous]; familial hyperpp; gamstorp disease
Patient organizations
- Muscular Dystrophy AssociationHyperkalemic periodic paralysis · United States
- Periodic Paralysis AssociationHyperkalemic periodic paralysis · United States
You are more than your diagnosis
Perspectives from people navigating life with Hyperkalemic periodic paralysis.
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