PERIODIC PARALYSIS NETWORK, INC.
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Advocacy

The Periodic Paralysis Network, Inc. is unique compared to the other Periodic Paralysis organizations. We provide hope to individuals with all forms of Periodic Paralysis (PP) through support, education and 'advocacy.' We work toward the improvement of quality and safety in healthcare for them. We are concerned with and advocate for their safety and proper medical and personal treatment by medical professionals. We are members of the Patient Advocate Directory!!! They are a worldwide network of individuals and independent organizations working toward the improvement of quality and safety in healthcare.

Some may wonder why this is a concern and why we feel it is necessary to advocate for the health and safety for people with Periodic Paralysis? We believe it is essential due to the serious nature and potentially life-threatening symptoms and side effects of this condition if it is not treated correctly. Periodic Paralysis is a mineral metabolic disorder and must be treated as such. We feel it is our duty to keep individuals safe and to give them the information and tools necessary to do that.

As advocates we also pass along the information about the off-label drugs, which are typically prescribed for every form of Periodic Paralysis. Some do well on them, but many more have serious side effects. We provide the facts to those who are considering using them to be aware of the side effects and possible problems from them. We also caution everyone who has Periodic Paralysis to be very careful of taking any drugs or medications, anesthetics for surgery and IVs because they can be harmful and cause serious side effects, even death.

We are also concerned with the archaic and potentially life-threatening practice by uninformed doctors of provoking an individual's symptoms and paralysis in order to diagnose a patient. Many individuals with Periodic Paralysis have been harmed or died during such a procedure.

Unless there are medical professionals with up-to-date information and an unbiased understanding of Periodic Paralysis in an emergency; an ambulance, an emergency room and hospital are extremely unsafe locations for most people with this condition. Many individuals while seeking a diagnosis see specialists and medical professionals who do not recognize the condition and may prescribe inappropriate and unnecessary medication, which may be harmful or deadly.

For all of the above reasons, we are concerned with and advocate for the safety and proper medical and personal treatment by medical professionals and we find it necessary to work toward the improvement of quality and safety in healthcare for all people with Periodic Paralysis. It is our goal to help each individual to be the best he or she can be, safely.


Blogs Written About The Effects of Drugs/Medications/Pharmaceuticals/Anesthesia in PP
By Susan Q Knittle Hunter


http://livingwithperiodicparalysis.blogspot.com/…/pharmaceu…
http://livingwithperiodicparalysis.blogspot.com/…/triggers-…
http://livingwithperiodicparalysis.blogspot.com/…/idiosyncr…
http://livingwithperiodicparalysis.blogspot.com/…/why-peopl…
http://livingwithperiodicparalysis.blogspot.com/…/permanent…
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http://livingwithperiodicparalysis.blogspot.com/…/rhabdomyo…
http://livingwithperiodicparalysis.blogspot.com/…/periodic-…
http://livingwithperiodicparalysis.blogspot.com/…/beware-of…



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