hkpp.org Review:

Periodic Paralysis Intl. - Medically accurate, up-to-date information about the periodic paralyses accessible to patients, caretakers and physicians.

  • http://hkpp.org/about-us About Periodic Paralysis International | Periodic Paralysis Intl. - Periodic Paralysis International and Our Mission Periodic Paralysis International is a registered not-for-profit company based in Alberta, Canada, serving patients and physicians world-wide. Our organization is run entirely by volunteers. Our purpose is to disseminate timely, medically accurate and useful information, to provide supportive services, and to conduct and encourage research which enhances the quality of life for people with skeletal ion channelopathies, i.e. the periodic paralyses. 
  • http://hkpp.org/emergency-care Emergency Care | Periodic Paralysis Intl. - Drugs that prolong QT Interval - from ArizonaCERT | Center for Education and Research on Therapeutics. FDA Drug Update: Antibiotic - Zithromax or Zmax Safety Announcement
  • http://hkpp.org/what-is-periodic-paralysis What is Periodic Paralysis? | Periodic Paralysis Intl. - The periodic paralyses are a group of rare inherited disorders that cause temporary episodes of muscle weakness or paralysis. Periodic Paralysis is found in all races and in both sexes. Some patients have their first attack within minutes of birth, but a few don't have symptoms until they are in their 60’s or 70’s. Attacks can last only a few moments or go on for days, depending on the type of periodic paralysis the person has. Some forms of periodic paralysis include muscle stiffness or rigidity as part of the attacks.
  • http://hkpp.org/hkpp-listserv HKPP Listserv Page | Periodic Paralysis Intl. - We invite medically diagnosed patients to join the HKPP Listserv.  Our goals are:
  • http://hkpp.org/patients Information for Patients and Caregivers | Periodic Paralysis Intl. - It is not easy to find medically accurate, up-to-date information about the periodic paralyses. This site contains two types of information; 1) that which is drawn directly from medical journals, textbooks and presentations by experts in the field of the periodic paralyses and 2) that which is drawn from surveying groups of diagnosed patients with periodic paralysis.
  • http://hkpp.org/physicians Information for Medical Professionals | Periodic Paralysis Intl. - This site contains information to guide the physician who cares for a patient with the primary ion channelopathy periodic paralysis, or who has a patient they suspect may have periodic paralysis. There are medically accurate, referenced articles on diagnostics, management, therapy plus informational material which may be printed and shared with patients. Periodic Paralysis can occur in many disorders. It is a challenge to separate primary from secondary causes, and to narrow the field from renal, autoimmune and adrenal disorders to a skeletal ion channelopathy.
  • http://hkpp.org/node/181 Anaesthesia and peri-operative care in the primary Periodic Paralysis Disorders | Periodic Paralysis Intl. - 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 anesthesia 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.
  • http://hkpp.org/donate Donate to Periodic Paralysis International | Periodic Paralysis Intl. -   Help us maintain our services. If the information on our site has been of help to you please support our work. Use your credit card, bank card or PayPal account to donate today! 
  • http://hkpp.org/FDA%20Approves%20TARO%27s%20Dichlorphenamide%20under%20name%20Keveyis™ FDA Approves Taro’s Keveyis™ (dichlorphenamide) for Primary Periodic Paralysis | Periodic Paralysis Intl. - FDA Approves Taro’s Keveyis™ (dichlorphenamide) for Primary Hyperkalemic and Hypokalemic Periodic Paralysis Orphan Drug is First Approved Treatment for Patients Living with Rare Debilitating Disease   Keveyis is now supplied free of charge to US patients by Taro Pharmaceuticals. The process is handled by Envoy Health. The numbers for Envoy are: 1-855-768-9727 and 1-810-553-4090. You need a prescription from your doctor, but call Envoy first for instructions on how to apply and proceed.
  • http://hkpp.org/node/175 The Membrane Potential, Voltage-Gated Ion Channels and Action Potentials | Periodic Paralysis Intl. - Action Potentials 1 - Resting Membrane Potential: This is the first tutorial in a series on Action Potentials. This video looks at how the Na+/K+ ATPase Ion Transporter sets up a voltage across a membrane. Action Potentials 2 - Voltage-Gated Ion Channels: This second tutorial looks at how the Voltage Gated Na+ & K+ Ion channels change the voltage across the membrane of a cell and thus produce an action potential.
  • http://hkpp.org/Long%20Exercise%20Text%20CMAP Long-time exercise test in the diagnosis of periodic paralysis | Periodic Paralysis Intl. - 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. Abstract BACKGROUND: The long-time exercise test (ET) is used to diagnose the primary periodic paralyses (PPs). However the reference values of ET are many and various. This study aimed to investigate the reference value of long-time ET in the diagnosis of PPs.
  • http://hkpp.org/node/157 Starting Acetazolamide (Diamox) | Periodic Paralysis Intl. - Because this is a frequently asked question from patients we post here a reply: Question: My doctor wants to prescribe a medication called acetazolamide. Is that okay for someone with Hypokalemic periodic paralysis. When I look on the web it says this medication causes you to excrete potassium. How can that be good for me? Answer:
  • http://hkpp.org/node/151 A Quick Overview of Hypokalemic Periodic Paralysis | Periodic Paralysis Intl. -   1) Patient has "attacks" of weakness and/or floppy paralysis. 2) First attacks occur by the age of 16 in 65% of patients.
  • http://hkpp.org/node/179/ Nutrient Intake Calculator | Periodic Paralysis Intl. - Optimum Nutrition is important for maintanence of health. Make sure you are eating a healthy diet! Here are sites where you can find: All the nutrients in almost any food. Sodium Intake should be kept below 2 grams daily for HypoKPP patients. Sodium content in many different foods 
  • http://hkpp.org/node/154 Measuring quality of life impairment in periodic paralyses | Periodic Paralysis Intl. - 
Measuring quality of life impairment in skeletal muscle channelopathies.
 Eur J Neurol. 2012 May 19. doi: 10.1111/j.1468-1331.2012.03751.x. [Epub ahead of print] Sansone VA, Ricci C, Montanari M, Apolone G, Rose M, Meola G; INQoL Group.
Source Department of Neurology, University of Milan, IRCCS Policlinico San Donato, Milan, Italy.
 Abstract
   Link to pdf copy of entire article  BACKGROUND AND PURPOSE:
  • http://hkpp.org/node/156 The Life and Death of Aleksandr Batutenko | Periodic Paralysis Intl. - This article is dedicated to the memory of Aleksandr Batutenko, a person who was not afraid to declare publicly his rare disease. It was written by Aleksandr Batutenko's wife Nadezhda, and it is published here with her permission. Aleksandr was a brave young man who lost his life trying to clarify his diagnosis for the benefit of other periodic paralysis patients in the Ukraine. 
  • http://hkpp.org/node/173 Dichlorphenamide: A Review in Primary Periodic Paralyses. | Periodic Paralysis Intl. - Dichlorphenamide: A Review in Primary Periodic Paralyses. Greig SL; Drugs. 2016 Mar;76(4):501-7. doi: 10.1007/s40265-016-0559-2. Abstract

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