Periodic Paralysis Network, Inc.
Periodic Paralysis is a Rare Mineral Metabolic Disorder
The Periodic Paralysis Network, Inc. provides assistance to individuals with Periodic Paralysis through Awareness, Support, Education and Advocacy (ASEA) and by providing a hands-on approach to understanding the condition, getting a proper diagnosis, managing the symptoms in all natural ways and assisting their caregivers and family members.
~ Mission Statement ~
Introduction To Periodic Paralysis
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, tightness 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 the 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 Susan Q. Knittle-Hunter and John D. 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. John 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.
My name is Susan the managing director of Periodic Paralysis Network, Inc.. I was diagnosed with an extremely rare, hereditary, debilitating, genetic disorder called Periodic Paralysis on February 7, 2011 at the age of 62. The form I have is a variant of Andersen-Tawil Syndrome (ATS). I was misdiagnosed for over 50 years. Since my diagnosis ten years ago, John and I have co-founded and co-created the Periodic Paralysis Network, Inc. We are incorporated and are now co-managers of our forum containing our ‘support, education and advocacy’ group with over 1,000 members from around the world, several other distinct discussion groups, a Blog, two Facebook pages and we have written and published four books about Periodic Paralysis. We work towards improving the quality of life and safety of individuals with Periodic Paralysis from all over the world.
Our focus is on educational resources to build self-reliance and self-empowerment and to prevent possible harm from improper treatment. Our approach to treatment focuses on the self-monitoring of vitals and the management of symptoms through natural, drug-free methods. We also offer strategies to understanding the disease, getting a proper diagnosis, managing the symptoms, and assisting caregivers and family members. We continue to do research and provide the latest information. Members will receive encouragement, support, sympathy, empathy and validation and information about all aspects of Periodic Paralysis.
My name is John and I am the computer guy working behind the scenes. Susan keeps me well informed about your daily personal struggles with Periodic Paralysis. I hope that our information and website helps to ease some of your daily suffering. I am available to chat about Periodic Paralysis or anything related to computers and websites at any time. Click here for more information.
Periodic Paralysis Network, Inc. (PPNI)
Providing Hope Through
Awareness – Support – Education – Advocacy (ASEA)
PPNI is here to provide awareness of Periodic Paralysis around the world for individuals with the condition and their family members. This is accomplished through ASEA services and features.
PPNI provides support to individuals with Periodic Paralysis and their family members and caregivers. We do this in many ways for more than 1,000 members worldwide.
PPNI provides educational materials to individuals with Periodic Paralysis, caregivers, family members, medical professionals and anyone else interested to learn about Periodic Paralysis.
PPNI encourages community healthcare professionals to provide informed and compassionate care to individuals with Periodic Paralysis and their family members in an unbiased manner.
Periodic Paralysis Network, Inc. (PPNI)
Products - Services - Features
If You Have Periodic Paralysis
If you have Periodic Paralysis, are seeking a diagnosis, are a family member or caregiver you are invited to join the private support group.