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.
FDA Approves Taro’s Keveyis™ (dichlorphenamide) for Primary Hyperkalemic and Hypokalemic Periodic Paralysis
This Orphan Drug is the first approved treatment for patients living with this category of rare debilitating diseases, and our community owes a huge debt of gratitude to Dr. Jacob Levitt, President of the Periodic Paralysis Association, who has worked tirelessly for the last 15 years to bring this treatment to market. Without his committment and hard work we would never had access to this, one of the most effective treatments many of us have ever had. Thank you Dr. Jake! You are our HERO!
An experience NOT to be missed: Now taking registrations; the 2015 Periodic Paralysis Association Conference - OCTOBER 23, 24, 25 at the Rosen Shingle Creek Resort in Orlando, Florida; Register NOW
Confused about how the muscle membrane potential is maintained, and how potassium and sodium stay in balance? These three short videos will bring you up to speed!
New study expands database for reference values for the Long Exercise Test (CMAP) Ding Z, Liu M, Cui L. Reference value of long-time exercise test in the diagnosis of primary periodic paralysis. Chin Med J (Engl). 2014;127(18):3219-23.
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
So much information - How do I know if it's correct or not? From the Genetic Alliance, 3 questions help decide: Do I Trust it or Trash it?
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