PERIODIC PARALYSIS NETWORK, INC.
Hope - Support - Education - Advocacy
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Support


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 over 300 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 natural 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.

Our 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. (At this time we are close to completing and publishing our latest book; a guide and workbook. It 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.)

We offer more support with two other discussion groups. We have a discussion group for our book. We encourage those who have read the book to join in dialogue about it. 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 two Facebook Pages, trying to bring awareness to others about Periodic Paralysis and by doing so offering support to our members. Individuals are encouraged to share their stories in "Our Stories: You are Not Alone" yet another way to support each other.


Periodic Paralysis Blog:

Periodic Paralysis Support and Education Group:

Periodic 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:

Our Stories; You Are Not Alone

Facebook Network; Let's Chat




Periodic Paralysis Network, Inc. (PPNI).
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