Living with Hypokalemic periodic paralysis
A genetic condition with episodes of extreme muscle weakness, usually starting in childhood or the teen years.
Understanding Hypokalemic periodic paralysis
Episodes usually involve a temporary inability to move muscles in the arms and legs and last from hours to days. Some people have attacks almost daily, others weekly, monthly, or rarely. Triggers include rest after exercise, a viral illness, some medicines, a big carbohydrate-rich meal, or hard exercise in the evening. Potassium in the blood is usually low during attacks. Some people develop lasting weakness later in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Episodes of severe muscle weakness
- Temporary paralysis
- Exercise-related muscle tiredness
- Reduced tendon reflexes
- Low blood potassium during attacks
- Lasting weakness later in life in some
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
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 genes (also called variants) cause this condition. It is autosomal dominant, meaning one changed copy of the gene can be enough to cause it.
Also known as: familial hypokalemic periodic paralysis; familial periodic paralysis (& [hypokalaemic]); hkpp; hokpp; hokpp - hypokalemic periodic paralysis; hypokalemic familial periodic paralysis
Patient organizations
- Muscular Dystrophy AssociationHypokalemic periodic paralysis · United States
- Periodic Paralysis AssociationHypokalemic periodic paralysis · United States
You are more than your diagnosis
Perspectives from people navigating life with Hypokalemic periodic paralysis.
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