Periodic Paralysis Network, Inc.

    NEW PUBLICATION! Press Release

    living with Periodic Paralysis
    The Mystery Unraveled

    by Susan Quentine Knittle-Hunter
    and Calvin Hunter

    living with Periodic Paralysis is a must read for anyone suffering from the devastating effects of the mysterious disease called Periodic Paralysis. After nearly dying and after many years of misdiagnosis and mistreatment by medical professionals, Susan and Calvin uncover the cause of her illness. Based on a lifetime of experience and after nearly 3 years of experimentation, detailed research and tremendous study, they share their discoveries. living with Periodic Paralysis unravels the inherent mysteries of this rare condition.

    Publication Date: May 09 2013
    ISBN/EAN13: 1484062248 / 9781484062241
    Page Count: 444
    Paperback - Kindle - EBook
    Language: English

    Order Your Copy
    Hello, my name is Susan Q. Knittle-Hunter. I have a very rare, debilitating, hereditary and difficult to diagnose disease called Periodic Paralysis. I was 62 when I was finally diagnosed, 3 years ago. It is a mineral metabolic disorder called an ion channelopathy. It is often misdiagnosed and mistreated, thus causing more damage or possible death to the person with it. There are several types and the form I have, a variant of Andersen-Tawil Syndrome, is the most rare and the most serious type. (Long QT interval heartbeats can accompany the episodes.) (Specialists say there are only about 100 of us worldwide diagnosed but it would appear there are many more than that who are not diagnosed or misdiagnosed.)

    On a cellular level, triggered by things such as sleep, exercise, sugar, salt, most medications, stress, cold, heat, anesthesia, adrenaline, IVs, etc., potassium wrongly enters the muscles either temporarily weakening or paralyzing the individual. Episodes can be full body lasting hours or days. Permanent muscle weakness may occur over time. If it affects the breathing muscles it can become terminal. Dangerous heart arrhythmia, heart rate fluctuation, blood pressure fluctuation, choking, breathing difficulties, cardiac arrest and/or respiratory arrest can also accompany the episodes. Due to these complications, it is extremely important to avoid the episodes. Gradual, progressive, muscular weakness can also affect the individual with this condition.

    There are no known cures, but there are treatments/drugs for some forms, which can be and are successful for some individuals.

    The type I have, however, has no traditional medications, which can alleviate the symptoms, but by avoiding the triggers and by using some natural methods, the number of paralytic episodes can be reduced and the severity of the episodes can be lessened. Due to many wrong diagnoses and improper medications, I am severely disabled in a power wheelchair and on oxygen therapy 24/7. I was having episodes 4 to 5 times a day but now, with the natural methods have been able to reduce the number to about 1 or 2 a month with less severity and for shorter periods of time.

    Although I am ill myself, my husband Calvin and I, both retired special education teachers with degrees in psychology also, have created this independent organization, the Periodic Paralysis Network, which is patient-safety-related due to the serious nature and potential life-threatening symptoms and side effects of this condition if it is not treated correctly.

    We have a forum containing 3 distinct discussion groups, a blog, 2 Facebook pages, a Pinterest site and we recently published a book, Living With Periodic Paralysis: The Mystery Unraveled, which is an extension of our website and the only book written about it. We work towards the improvement of the quality and safety of patients from all over the world with the various forms of Periodic Paralysis. 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 methods. We also offer strategies to understanding the disease, getting a proper diagnosis, managing the symptoms, and assisting caregivers and family members.

    We get new members almost daily from all over the world (Iran, Ukraine, Turkey, Denmark, Wales, Netherlands, Belgium, Canada, Finland, Australia, Mexico, Argentina, Ireland, Scotland, Bangladesh, Pakistan, Philippines and more) that are seeking help for themselves, their children and entire families and are unable to find it anywhere. We provide ideas on how to find doctors, get a diagnosis, get the proper help in the ER, how to discover their triggers, and more.

    In our book, we share my story of near death due to misdiagnoses and improper treatment of this mysterious disease, to hope through natural management techniques. We bring awareness of PP to others who may have it and to doctors for more timely recognition, diagnosing and correct treatment. Our book highlights problems within the medical system today and shares insight into the social and psychological aspects of living with a rare, chronic and progressive disease.

    It is our hope that the medical professionals dealing with individuals with Periodic Paralysis may come to our site or read our book and learn more about how to recognize, diagnose and properly treat their patients in a timely manner.

    Please join us on one or all of our sites:

    Susan Q. Knittle-Hunter
    Calvin Hunter

    Periodic Paralysis Informational Video:

    Periodic Paralysis Blog:

    Periodic Paralysis Support and Education Group:

    Periofic Paralysis Book Discussion Group:

    Periodic Paralysis Network Genealogy:

    Periodic Paralysis Network Page:

    Periodic Paralysis Network Pinterest:"

    Susan Q. Knittle-Hunter and Calvin Hunter Authors Page:

    Read our story in an article published by "Living on the Peninsula, Fall 2013" (page 33).

    Living on the Peninsula, Fall 2013

    Periodic Paralysis is a rare, hereditary disease characterized by episodes of muscular weakness or flaccid paralysis without the loss of sensation or consciousness. It is a channelopathy; a disease involving dysfunction of an ion channel for potassium, sodium, chloride and calcium. There are three types: Hypokalemic Periodic Paralysis, results from potassium moving from the blood into muscle cells in an abnormal way. It is associated with low levels of potassium during paralytic episodes. Hyperkalemic Periodic Paralysis results from problems with the way the body controls sodium and potassium levels in cells. It is associated with high levels of potassium during paralytic episodes. In Andersen-Tawil Syndrome ATS, 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 in the normal ranges of potassium. Periodic Paralysis is mineral metabolic disorder.

    More about Periodic Paralysis

    The Periodic Paralysis Network was created to provide a hands-on approach to understanding the disease, getting a proper diagnosis, managing the symptoms, and assisting caregivers and family members. We will attempt to discuss issues relating to Periodic Paralysis in practical language. Our hope also is that the medical professionals dealing with individuals with Periodic Paralysis may come to our site and learn more about how to recognize, diagnose and properly treat their patients in a timely manner.

    Press Release, 03-19-2011, Daily Herald, Susan Hunter

    "Woman tracks down cause of her paralysis;"

    KTVL News 10, May 17, 2011 4:55 AM Press Release

    "Susan Knittle-Hunter is thrilled to be Tuesday’s Facebook Friend of the Day."

    She is a retired special education teacher that lives in Grants Pass with her husband. She has three children and five grandchildren. Knittle-Hunter says she is very interested in local and world news. Even more, she spends a lot of time on Facebook interacting with her friends and family. But her time on the computer isn’t all about news. It is about research and writing. Knittle-Hunter has a very rare disease – Andersen-Tawil Syndrome, a form of Periodic Paralysis. Doctors have only diagnosed 100 people in the world with it. Knittle-Hunter has created a website about her disease and is writing a book. The site is designed to created a hands-on approach to understanding the disease, symptom management and getting proper diagnosis. She said she has been ill since she was a child and medical professionals misdiagnosed her for many years. “I was not diagnosed in a timely manner and am so ill now that all I can do is sit in a recliner,” Knittle-Hunter said. “I become paralyzed periodically due to potassium shifting in my muscles.” She shares her story on her website."

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