The Books: “Living with Periodic Paralysis: The Mystery Unraveled,” "The Periodic Paralysis Network Workbook And Guide,” “A Bill Of Rights For Periodic Paralysis Patients” and “What Is Periodic Paralysis: A Disease Like No Other"
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What Is Periodic Paralysis?
Periodic Paralysis (PP) is a rare, mineral metabolic disorder, called an ion channelopathy. It is generally inherited and characterized by episodes of muscular weakness or flaccid paralysis without the loss of sensation or consciousness (though both can happen). Dysfunction of the ion channels for potassium, sodium, or calcium is involved. Regular activities such as sleep, exercise, eating, and taking medications can trigger muscle paralysis. Episodes of muscle paralysis can be full body lasting minutes, hours or days. Permanent muscle weakness may occur over time. During periods of muscle paralysis a person may experience difficulty breathing, heart rate fluctuation and arrhythmia, blood pressure fluctuation, and choking. It can be life threatening. PP is often misdiagnosed and mistreated by medical professionals.
What Is Periodic Paralysis Network, Inc.?
The Periodic Paralysis Network, Inc., also known as PPNI was founded in 2011. It is an on-line organization with a multifaceted forum designed to provide hope through support, education and advocacy to individuals with all forms of Periodic Paralysis and their family members and to educate all medical professionals on how to recognize, diagnose and properly treat their patients in a timely manner, using all natural and drug-free methods.
Who Are We?
Hello, we are Calvin Hunter and Susan Q. Knittle-Hunter the Co-creators and Co-founders of the Periodic Paralysis Network, Inc. Susan, the Managing Director, was diagnosed on February 7, 2011, at the age of 62, with Andersen-Tawil Syndrome (ATS) a rare form of Periodic Paralysis. She is a retired Special Education Teacher with degrees in Psychology as well. Calvin Hunter, the Primary Director, is also a retired Special Education Teacher. He has degrees in Behavioral Science, Psychology and Information Technology. He was instrumental in securing Susan's diagnosis and in saving her life through research and application of his finding, using all natural and drug-free methods. They have co-authored and published four books.
What Do We Do?
The Periodic Paralysis Network Inc. provides a hands-on approach to understanding the disease, getting a proper diagnosis, managing the symptoms, using all natural and drug-free methods and assisting caregivers and family members. The focus is on educational resources and self-reliance. The approach to treatment focuses on the self-monitoring of vitals and the management of symptoms through natural and common sense methods. Research provides the latest information to our members. Members from around the world receive encouragement, support, advocacy, empathy and validation. Members also gain information and knowledge about all aspects of Periodic Paralysis. Members receive answers to all questions, replies to posts and support and advocacy as needed in a timely manner, usually real-time.
PERIODIC PARALYSIS NETWORK
Hope - Support - Education - Advocacy