There was and is a great need for a bill of rights for all individuals who have a form of the disabling mineral metabolic disorder known as Periodic Paralysis. The Periodic Paralysis Network (PPN), 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 (Awareness, Support, Education and Advocacy), begins with an explanation of what a ‘bill of rights’ is and why they are written or created. ‘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.
“We hope also, that this knowledge will empower all individuals with Periodic Paralysis to support and defend themselves in dealing with all medical professionals, in all situations, by knowing and understanding their medical rights. This includes their general rights, diagnosis, treatment in labs, treatment by doctors and treatment in the emergency room and the areas of research, awareness and insurance.” (Page 109)