This week is the 4th anniversary of the release of our book "A Bill Of Rights For Periodic Paralysis Patients." This is an important book to add to your collection if you do not already have it. Most of us are under recognized, under diagnosed, misdiagnosed, misunderstood and mistreated by the medical professionals with whom we must deal and depend upon for our care. This book helps to empower you in these dealings by allowing you to know your rights in order to get correctly diagnosed and to stay safe in receiving the appropriate care. These rights include general rights; diagnostic rights; the right to proper treatment in the laboratory, by doctors and in the ER; the right to research and awareness and issues related to insurance rights. These have been and are being violated in many cases.
Many of our members carry this book with them to all of their medical appointments!!
Link to purchase book:
https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1
Below is more information about the book including the Contents, Preface and Introduction.
"A Bill Of Rights For Periodic Paralysis Patients"
From
The Periodic Paralysis Network A.S.E.A. Series
Awareness ~ Support ~ Education ~ Advocacy
Volume One
Susan Q. Knittle-Hunter
&
Calvin Hunter
Table of Contents
About A.S.E.A. vi
Preface viii
Acknowledgements ix
Introduction x
What is a Bill of Rights? 13
The General Rights 29
The Diagnosis of Periodic Paralysis 41
Treatment in the Laboratory 55
Treatment by Doctors 63
Treatment in the ER and Hospital 75
Research and Awareness 99
Insurance 105
Conclusion 109
Periodic Paralysis Forum 110
About the Authors 111
Preface
The Preface of a book gives the reader information about how the book came to be, where to idea originated. In the case of this booklet, the members of the ‘Periodic Paralysis Network Support, Education and Advocacy Group’ inspired A Bill of Rights For Periodic Paralysis Patients. The members, now over 425 (over 900 now) worldwide, share daily their heart-breaking and frustrating experiences. They relate frightening symptoms, years of painful and costly testing, a lack of being believed, abuse by doctors, denial of diagnoses and denial of proper treatment. These courageous and very ill people are under recognized, under diagnosed, misdiagnosed, misunderstood and mistreated by the medical professionals with whom they must deal and depend upon for their care. Their general rights; diagnostic rights; the right to proper treatment in the laboratory, by doctors and in the ER; the right to research and awareness and issues related to insurance rights have been and are being violated in many cases. This needs to stop.
For these reasons a bill of rights for individuals with Periodic Paralysis has been created, by the PPN. The information used to outline, describe and explain these concepts and rights are referenced and can be found at the Periodic Paralysis Network, Inc. Website, Blog Articles, Discussion Groups and Books.
Introduction
As discussed in the Preface and for the reasons listed, there was and is a great need for a bill of rights for all individuals who have a form of the metabolic disorder known as Periodic Paralysis. The Periodic Paralysis Network, inspired by the members of the ‘Periodic Paralysis Network Support, Education and Advocacy Group’ has now created A Bill of Rights For Periodic Paralysis Patients. This booklet, the first in the PPN A.S.E.A. Series, begins with an explanation of what a ‘bill of rights’ is and why they are written or created.
Next, ‘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 to insure correct and proper care. By pointing out the wrongs, it is greatly desired that these wrongs can be made right and corrected.
More information and referencing can be found at the Periodic Paralysis Network Inc Website, Blog Articles, discussion groups and books; Living With Periodic Paralysis: The Mystery Unraveled, The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally and What is Periodic Paralysis?: A Disease Like No Other.
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