Welcome to Periodic Paralysis International!
Serving the Periodic Paralysis Community for 20 Years!
"To give real service, you must add something which cannot be bought or measured with money, and that is sincerity and integrity." Douglas Adams
We are mission-driven, independent and not-for-profit. 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.
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.
The Empowered Patient
Trying to 'change the culture of medicine' by letting patients decide what gets researched; Patients can bring attention to issues they face that may not previously have been studied. A new approach to medical research in Canada lets patients help decide what gets studied, and how. No longer are scientists toiling away in labs in isolation. Patients and their family members or caregivers are increasingly involved behind the scenes, working alongside researchers, doctors and decision-makers at all stages of the research process. "Fairness and justice would say these people have got the disease … surely they should have a bit of a say," says Dr. Andreas Laupacis of Toronto's St. Michael's Hospital. As a health researcher at the Li Ka Shing Knowledge Institute, he's advocated that patients should be more involved in setting research priorities.
How many times have you needed, and not had, test results, or medical history you didn't have? It's Time to redesign medical data:
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.
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
Measuring quality of life impairment in skeletal muscle channelopathies. Sansone VA, Ricci C, Montanari M, Apolone G, Rose M, Meola G; Eur J Neurol. 2012 May 19. 1468-1331
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?
How to Prevent Falls. 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.
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.
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