Periodic Paralysis Network Support


~Mission Statement~

The Periodic Paralysis Network Forum provides assistance to individuals with Periodic Paralysis (PP) 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.


What is Periodic Paralysis? (PP)

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.


Common Forms of Periodic Paralysis (PP)

Hypokalemic PP (HypoPP or HypoKPP)

Also known as Westphall Disease, in HypoKPP, paralysis results from potassium moving from the blood into muscle cells in an abnormal way due to the calcium channel not signaling for appropriate release of calcium. It is associated with low levels of potassium in the blood (hypokalemia) during paralytic episodes.

Normokalemic PP (NormoPP or NormoKPP)

Paralysis results when potassium shifts within in normal ranges. This can happen in any form of PP; Hypokalemic PP, Hyperkalemic PP, Normokalemic PP and Andersen-Tawil Syndrome. The paralysis may result from the shifting itself, rather than low or high potassium or it may occur due to the shifting of the potassium, which can happen very quickly and is undetectable in lab testing.

Hyperkalemic PP (HyperPP or HyperKPP)

In HyperKPP, also known as Gamstorp Disease, Paralysis results from sodium flowing into the cells because the channel remains open inappropriately. It is associated with high levels of potassium in the blood (hyperkalemia) during paralytic episodes.

Andersen-Tawil Syndrome (ATS)

With ATS, also known as Long QT Syndrome 7, paralysis results when the channel does not open properly; potassium cannot leave the cell. This disrupts the flow of potassium ions in skeletal and cardiac muscle. During paralytic episodes, ATS can be associated with low potassium, high potassium or shifts within the normal (normokalemia) ranges of potassium. An arrhythmia, long Qt interval heartbeat, is associated with ATS as well as certain characteristics, such as webbed or partially webbed toes, crooked little fingers and dental anomalies.

Paramyotonia Congenita (PMC)

With PMC, also known as Von Eulenberg’s Disease, the skeletal muscles can become stiff, tight, tense or contracted and weak when the sodium channels close much too slowly and the sodium, potassium, chloride and water continues to flow into the muscles. It is actually considered to be a form of Hyperkalemic PP, however, the symptoms can appear from shifting of potassium into low or high ranges or even if potassium shifts within normal levels.


Providing Hope Through

Awareness | Support | Education | Advocacy


Awareness

PPNI is here to provide awareness of PP around the world for individuals with the condition and their family members. This is accomplished through ASEA services and features.  

Go To PPNI ASEA Information Page

Support

PPNI provides support to individuals with PP and their family members and caregivers. We do this in many ways for more than 1,000 members worldwide.

Go To PPNI ASEA Information Page

Go To Facebook Periodic Paralysis Network Support Group

Education

PPNI provides educational materials to individuals with PP, caregivers, family members, medical professionals and anyone else interested to learn about PP.

Go To PPNI ASEA Information Page

Advocacy

PPNI encourages community healthcare professionals to provide informed and compassionate care to individuals with PP and their family members in an unbiased manner.

Go To PPNI ASEA Information Page


Periodic Paralysis Network, Inc. (PPNI)

Introduction

PPNI was founded in 2014. It is an on-line organization with a multifaceted forum designed to provide hope through Awareness, Support, Education and Advocacy to individuals with all forms of PP 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.

PPNI 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 PP. Members receive answers to all questions, replies to posts and support and advocacy as needed in a timely manner, usually real-time.

Susan Q. Knittle-Hunter and John D. Hunter are the Co-creators and Co-founders of PPNI. Susan, the Managing Director, was diagnosed on February 7, 2011, at the age of 62, with Andersen-Tawil Syndrome (ATS) a rare form of PP. 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.


Products – Services – Features

If You Have Periodic Paralysis

If you have PP, are seeking a diagnosis, are a family member or caregiver you are invited to join the private support group.

The Periodic Paralysis Network Support, Education and Advocacy Group

Information About Periodic Paralysis: The Blog

The Blog: Living With Periodic Paralysis Blog

PPNI Publications

Living with Periodic Paralysis: The Mystery Unraveled

The Periodic Paralysis Guide And Workbook

A Bill Of Rights For Periodic Paralysis Patients           

What Is Periodic Paralysis?: A Disease Like No Other 

Periodic Paralysis Network Facebook Page

Facebook Page: Periodic Paralysis Network


Susan's Story

Susan Q. Knittle-Hunter

Story & Resume

My name is Susan the managing director of PPN. I was diagnosed with an extremely rare, hereditary, debilitating, genetic disorder called Periodic Paralysis (PP) 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. How could such a thing happen in today’s world with all of the modern medicine and technology? The following is my story, information about this cruel disease and how and why I control the symptoms. continue reading…


PPNI Publications Bookstore

(Paperback | Kindle | eBooks)


JD Hunter Profile

JD Hunter

Director | Author | Consultant

My name is JD and most of my work is done behind the scenes on the business side of PPNI. I enjoy PP research, web design and development and consulting in the areas of writing and task analysis. Susan keeps me well informed about PPNI online activities and I sincerely hope the information you find at PPNI is useful in many ways. Thank you for all the support and don’t hesitate to Contact me with any comments, questions, concerns or proposals.