Periodic Paralysis Network, Inc.
The Periodic Paralysis Network, Inc. (PPNI) 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.
~ Mission Statement ~
Introduction To Periodic Paralysis
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
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.
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.
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.
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.
Periodic Paralysis Network, Inc. (PPNI)
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.
Hello, we are Susan Q. Knittle-Hunter and John D. Hunter 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.
The 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.
My name is Susan the managing director of PPNI. 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. Since my diagnosis ten years ago, John and I have co-founded and co-created PPNI. 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 PP. We work towards improving the quality of life and safety of individuals with PP 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 PP.
My name is JD and I am the IT guy working behind the scenes at PPNI. Susan keeps me well informed about PPNI online activities and I hope our information helps ease some of your daily struggles. Please contact me with any questions or concerns about PPNI.
Periodic Paralysis Network, Inc. (PPNI)
Providing Hope Through
Awareness – Support – Education – Advocacy (ASEA)
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.
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.
PPNI provides educational materials to individuals with PP, caregivers, family members, medical professionals and anyone else interested to learn about PP.
PPNI encourages community healthcare professionals to provide informed and compassionate care to individuals with PP and their family members in an unbiased manner.
Periodic Paralysis Network, Inc. (PPNI)
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.