Welcome to Periodic Paralysis International!

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Our website reflects our mission to make medically accurate, up-to-date information about the periodic paralyses accessible to patients, caretakers and physicians.

Our goal is to help create successful partnerships between physicians, researchers and periodic paralysis patients in order to speed diagnosis and improve therapy and management strategies, thereby improving quality of life and clinical outcomes for patients.

Resources for Parents with Children with Special Educational Needs

Children with Periodic Paralysis may require extra help or specialized services to be able to attend school. Laura Kaloi, Public Policy Director at the National Center for Learning Disabilities, explains the ins and outs of Individualized Education Programs (IEPs) in this video. For more information about IEPs, see "What Is an IEP?".

FDA Drug Update: Antibiotic - Zithromax or Zmax

Safety Announcement

[3-12-2013]   The U.S. Food and Drug Administration (FDA) is warning the public that azithromycin (Zithromax or Zmax) can cause abnormal changes in the electrical activity of the heart that may lead to a potentially fatal irregular heart rhythm. Patients at particular risk for developing this condition include those with known risk factors such as existing QT interval prolongation, low blood levels of potassium or magnesium, a slower than normal heart rate, or use of certain drugs used to treat abnormal heart rhythms, or arrhythmias.  This communication is a result of our review of a study by medical researchers as well as another study by a manufacturer of the drug that assessed the potential for azithromycin to cause abnormal changes in the electrical activity of the heart.

Management Information:

FAQ's for Starting Acetazolamide (Diamox)

New: A Quick Overview of Hypokalemic Periodic Paralysis

Potassium (K+) Supplements Commonly Prescribed for HypoKPP

Featured Reading:

The impact of permanent muscle weakness on quality of life in periodic paralysis: a survey of 66 patients, was published in the October 2012 issue of Acta Myologica. Co-authors were Periodic Paralysis International Director Deborah Cavel-Greant and Drs. Frank Lehmann-Horn and Karin Jurkatt-Rott. This survey identified aspects of PMW which had never been documented before. Thanks to all the patients who participated in the survey.

A new study reveals that the periodic paralyses adversely affect the quality of life as significantly as other chronic disabling disorders.