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.
Meet the Mom who started the Ice Bucket Challenge! Nancy Frates talks about the Frates family facing their son Pete's ALS diagnosis with courage and passion.
One of the most vital aspects of staying healthy when you have periodic paralysis is becoming an informed and empowered patient. When Dave deBronkart learned he had a rare and terminal cancer, he turned to a group of fellow patients online — and found the medical treatment that saved his life. Now he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.
Information in Danish: Nyhed- Information på dansk
Information in Spanish: Ahora la información en Español: Parálisis Periódicas
Information in Dutch: Nu hebben we informatie in het Nederlands! Overzicht van de periodieke verlamt in het Nederlands
Why does it take so long to get a diagnosis?
by Diane O'Leary, PhD
In a journal article published in October 2012 the average diagnostic delay reported by the 68 patients surveyed was 26 years! From the NORD Blog we bring you an eye-opening post about the incidence of rare diseases. It's estimated that the average family physician sees two-three patients a day with an often unrecognized rare disease! So we ask the question - WHY, in an era of instantly available information, does it take so long to get a diagnosis? Read more.
Falls are Dangerous!
Falling is a big problem for many of us. This excellent video from the Myositis Association shows how to prevent falls, how to get up after you've fallen and how to direct someone else to help you when you've fallen.
PPA 2013 Conference videos and presentations are now on-line! Watch them all!
NORD has released a state-by-state map and list of insurance resources. Invaluable information!
Featured Reading from members of our Medical Advisory Board:
Characterization of hyperkalemic periodic paralysis: a survey of genetically diagnosed individuals: Charles G; Zheng C; Lehmann-Horn F; Jurkat-Rott F; Levitt J: Neurol. 2013 Oct; 260(10):2606-13.
The impact of permanent muscle weakness on quality of life in periodic paralysis: a survey of 66 patients. Cavel-Greant F; Lehmann-Horn, F; Jurkatt-Rott, K; Acta Myologica; v.31(2); 2012 Oct
A new study reveals that the periodic paralyses adversely affect the quality of life as significantly as other chronic disabling disorders. Sansone VA, Ricci C, Montanari M, Apolone G, Rose M, Meola G; Measuring quality of life impairment in skeletal muscle channelopathies. Eur J Neurol. 2012 May 19. 1468-1331