The Periodic Paralysis Network, Inc. provides hope to individuals with all forms of Periodic Paralysis (PP) through 'support,' education and advocacy. We provide support to those who are diagnosed or attempting to get a diagnosis and to family members and caregivers. We do this in many ways, but our 'Periodic Paralysis Network Support, Education and Advocacy Group' is our most popular resource. We have nearly 1,000 members and gain more each week from all over the world, including Iran, Ukraine, Turkey, Denmark, Wales, Netherlands, Belgium, Canada, Finland, Australia, Mexico, Argentina, Ireland, Scotland, Bangladesh, Pakistan, Philippines just to name a few. (Visit our PPNI Members World Map).
Our members receive support, advocacy, encouragement, understanding, empathy, validation and more. Members also gain information and knowledge about all aspects of Periodic Paralysis. We provide ideas on how to find doctors, find a diagnosis, receive the proper help in the ER, how to discover triggers and much more. Members on this board are encouraged to engage in an open discussion of any topic of interest pertaining to various aspects of Periodic Paralysis. They may dialogue by asking questions, commenting on others posts and sharing ideas. This group is closed to public view due to the nature of the subject and by request of the members. We are usually on in real time, researching and answering questions and providing support as needed for our members.
Our focus is on educational resources and self-reliance. Our approach to treatment focuses on the self-monitoring of vitals and the management of symptoms through ALL NATURAL and DRUG-FREE methods such as the elimination of triggers and awareness of proper nutrition and supplementation. This approach evolved from the inability of the medical community to provide appropriate and safe medical diagnoses and treatment. We continue to do research and provide the latest information to our members.
Another of our popular features, offering support through the PPNI, is our Blog. We offer support for individuals, their family members, caregivers and medical professionals by offering an open site for anyone to visit and learn more about the many and multifaceted aspects of Periodic Paralysis. It is interactive and has a translator.
We have written four books. Our first book, ‘Living With Periodic Paralysis: The Mystery Unraveled’ is another means of support for individuals with all forms of PP. It is a comprehensive look at Periodic Paralysis. It contains 444 indexed pages with over 250 references. We share Susan's story of near death due to misdiagnoses and improper treatment of this mysterious disease and 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. This information supports all individuals with PP by providing the necessary tools to improve their lives, validate them and bring awareness of this condition to others for them. Our second book, ‘The Periodic Paralysis Guide And Workbook: Be The Best You Can Be’ is designed to accompany it or it may stand-alone. It contains all of the tools necessary to complete the goals and objectives of the various plans outlined in the book. Our third book, ‘A Bill Of Rights For Periodic Paralysis Patients’ is outlined in seven sections, covering general rights, diagnosis, treatment in labs, treatment by doctors and treatment in the emergency room and the areas of research, awareness and insurance. In those, each concept is described and explained based on the true and actual history, experiences and needs of individuals with Periodic Paralysis. Hopefully, this information will bring about awareness of these issues and educate everyone who has the occasion to read this booklet as well as the medical professionals with whom individuals with Periodic Paralysis must depend upon for correct and proper care. Our fourth book ‘What Is Periodic Paralysis?; A Disease Like No Other’ was written because there is a need to educate others and bring awareness of Periodic Paralysis to the world. This book explains the important aspects of Periodic Paralysis in simple terms and how they relate personally to and for each individual with this disabling condition. Some of the issues that are covered include but are not limited to, what Periodic Paralysis is and what it is not, how it is diagnosed, how it is treated, what the symptoms are, what causes the symptoms, what does an episode of paralysis look like, what is the prognosis and what kind of complications can occur. For each of these issues there is space for personal information to be included and written in as needed to further explain how the disease affects each individual before the book is passed to a family member, neighbor, doctor or teacher. Each concept is described and explained based on the true and actual history, experiences and needs of individuals with Periodic Paralysis. These books are available on Amazon.
We offer more support with several other discussion groups. We have a discussion group for our books. We encourage those who have read the books to join in dialogue about them. We also have a discussion group with a focus on genealogy research. We believe that many of us may link genealogically and genetically. The information we are gathering may aid in diagnosis in the future. We have groups for caregivers, for those with co-existing conditions and for dealing with the genetics of Periodic Paralysis.
PERIODIC PARALYSIS NETWORK
Hope - Support - Education - Advocacy
The Books: “Living with Periodic Paralysis: The Mystery Unraveled,” "The Periodic Paralysis Network Workbook And Guide,” “A Bill Of Rights For Periodic Paralysis Patients” and “What Is Periodic Paralysis: A Disease Like No Other"
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