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.

Anaesthesia and Periodic Paralysis

April 12, 2016: Adverse reactions to anaesthesia, including life-threatening events, are a serious concern for patients with Periodic Paralysis Disorders. Many of our patients report serious events associated with anaesthesia and side effects which may linger for days to months. There is rarely time for a surgical team to comb through journals and texts for the specialized knowledge needed to care for the patient with periodic paralysis.

In order to make this information easier to find retired Haemato-oncologist and ATS patient Dr. Annabelle Baughan, PPI Director Deb Cavel-Greant, HKPP Listserv member Jan Magalo, and Neurologist Dr. Frank Weber have prepared both a Literature Review and a set of Practical Guidelines physicians may consult when caring for a patient with one of the Periodic Paralyses. A new tab has been added to the menu bar at the top of the page to make these articles immediately available when needed. Check them out.

FDA Approves Taro’s Keveyis™ (dichlorphenamide) for Primary Hyperkalemic and Hypokalemic Periodic Paralysis

Taro Pharmaceutical Industries Ltd. is now providing Keveyis at no cost to all patients with periodic paralysis in the United States. 

The process is handled by Envoy Health. The numbers for Envoy are: 1-855-768-9727 and 1-810-553-4090. Patients need a prescription from your doctor, but call Envoy for instructions first. Keveyis 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!   

 

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!

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. 

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Information in Danish: Nyhed- Information på dansk 

Information in Spanish: Ahora la información en Español: Parálisis Periódicas 

Tambien Directrices de hospitalización para la parálisis periódica hipopotasémica en Español:

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? 

Why does it take so long to get a diagnosis?

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!

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NORD has released a state-by-state map and list of insurance resources. Invaluable information!

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Management Information:

FAQ's for Starting Acetazolamide (Diamox)

New: A Quick Overview of Hypokalemic Periodic Paralysis

Potassium (K+) Supplements Commonly Prescribed for HypoKPP

Counting milligrams of sodium, potassium, fat or carbs? Here's a handy resource

Is your medication in shortage? Check the FDA List.

Apnea Board.com

Sleep apnea is a sleep disorder characterized by abnormal pauses in breathing or instances of shallow breathing during sleep. Each pause in breathing, called an apnea, can last from a few seconds to minutes, and may occur 5 to 30 times or more an hour. Similarly, each shallow breathing event is called a hypopnea. Sleep apnea is diagnosed with an overnight sleep test called a polysomnogram, or "sleep study". From reports of Listserv members it appears patients with periodic paralysis may be at higher risk of sleep apnea than average. If you have been diagnosed with sleep apnea, or suspect you have sleep apnea, Apnea Board.com is the place to find reliable 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