Welcome to Periodic Paralysis International!
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.
PPA 2013 Conference videos and presentations are now on-line! Watch them all!
We've wondered for some time if some cases of hypokalemic periodic paralysis were not mitochondrial in origin? Now for the first time researchers have identified a patient with a mitochondrial origin for his hypokalemic paralysis.
Severe Hypokalemic Paralysis as a Manifestation of a Mitochondrial Disorder. Josef Finsterer and Stefan Lässer; Tohoku J. Exp. Med., 2013, 231, 9-12
Mitochondrial disorder (MtD) is usually a multisystem disease due to impaired mitochondrial energy production. Severe hypokalemia resulting in muscle weakness and rhabdomyolysis has not been reported as a phenotypic feature of Mitochondrial Disease. …Mitochondrial disorder (MtD) is most frequently due to impaired energy production by the respiratory chain or the oxidative phosphorylation. The biochemical defect may result from mutations in the mitochondrial DNA or the nuclear DNA. MtD may manifest as a syndromic or non-syndromic disorder, or as a mono-organ or multi-organ disease (Finsterer 2012). Read article
A new study "Characterization of hyperkalemic periodic paralysis: a survey of genetically diagnosed individuals", authored by Drs. Levitt and Charles of the Periodic Paralysis Association, Dr. Zheng of New-Haven Yale Hospital, New Haven CT, and Drs. Lehmann-Horn and Jurkatt-Rott of Ulm University reveals valuable information about Hyperkalemic PP and PMC. Read it in full; courtesy of the Periodic Paralysis Association:
We've added a new Hospitalization Information Sheet for HypoKPP patients en Espanol. It's in Open Document Format so download with your word processing program.
NORD has released a state-by-state map and list of insurance resources. Invaluable information!
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.