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. 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 201l. 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.
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 findings. They have co-authored and published three 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, 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.
The Website: Periodic Paralysis Network, Inc.
The Blog: Living With Periodic Paralysis Blog
Three distinct discussion groups:
Periodic Paralysis Network Support, Education and Advocacy Group
Periodic Paralysis Network Genealogy-Genetic Discussion Group
Periodic Paralysis Network Book Discussion Group
The Books: "living with Periodic Paralysis: The Mystery Unraveled",
"The Periodic Paralysis Network Workbook and Guide"
Two Facebook Pages: Periodic Paralysis Network, Inc.
Susan Q. Knittle-Hunter and Calvin Hunter, Authors.
PPN Members World Map:
How To Use This Site
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