Periodic Paralysis Awareness

My name is Susan Q. Knittle-Hunter. My husband Calvin and I are the co-founders, co-creators and co-managing directors of the Periodic Paralysis Network, Inc (PPN). We are seeking donations in order to fund a project to raise awareness of, and to tell the truth about, Periodic Paralysis (PP) an extremely rare, hereditary and debilitating genetic disorder. Bringing attention to this condition is necessary because not enough medical professionals have ever heard of it. Most of the doctors who have knowledge of PP do not know the actual facts about it, understand it or recognize it because they rely on and refer to old, outdated and wrong information. This means many individuals and families are not being diagnosed and they are not receiving appropriate treatment. This also means that most of them are at-risk of medical harm from misdiagnosis and the drugs and treatment they do receive.

We are passionate about this and believe it to be of great importance because I myself was diagnosed with Periodic Paralysis on February 7, 2011 at the age of 62!! Although I was actually born with it and suffered the effects of it for most of my life, I was misdiagnosed and mistreated with improper and unneeded drugs for over 50 years, causing unnecessary harm, permanent disability and near death. I have lost family members due to this and have other family members who cannot get diagnosed and still others who passed away never knowing that PP was what had disabled them. I do not wan this tocontinue to happen to others. It is difficult to understand how such a thing can happen in today's world with all of the modern medicine and technology in existence.

Although unbelievable, when it comes to Periodic Paralysis, a mineral metabolic disorder, (also known as a channelopathy) in most cases, much like mine, it is often not recognized and thus treated improperly. It is a disease, which is diagnosed after everything else has been ruled out. Research indicates this can take an average of twenty years, and is very costly. Due to the nature of symptoms, which come and go, it is often misdiagnosed as a ‘conversion disorder,’ which is a mental illness. If this happens, drugs to treat a somatic illness are then prescribed. These medications can cause harm or possible death to someone with Periodic Paralysis. The misdiagnosis also prevents the patient from ever receiving the correct diagnosis. If the symptoms are atypical or if other medical conditions co-exist, a diagnosis is also nearly impossible. Genetic testing is nearly nonexistent and can only be done for a few mutations, so diagnosis needs to be done based on symptoms.

Individuals with Periodic Paralysis and their family members go through hell for many years, and sometimes a lifetime, as they fight for a diagnosis and/or seek appropriate treatment for their symptoms. This needs to stop!

There are several forms of PP and on a cellular level, triggered by things such as sleep, exercise, sugar, salt, most medications, stress, cold, heat, anesthesia, adrenaline, IVs, and more, potassium (K+) wrongly enters the muscles either temporarily weakening or paralyzing the individual. Episodes can be full body lasting hours or days. Permanent muscle weakness may occur over time. If it affects the breathing muscles it can become terminal. Dangerous heart arrhythmia, heart rate fluctuation, blood pressure fluctuation, choking, breathing difficulties, cardiac arrest and/or respiratory arrest can also accompany the episodes. There are no known cures, but there are a few off-label drugs for some forms. Unfortunately most individuals cannot tolerate the side effects. Most treatment is based on avoiding the triggers, observing the symptoms, monitoring the vitals and possible potassium supplementation.

Despite being nearly totally disabled due to the lifetime of previous misdiagnoses and mistreatments, my husband Calvin and I continue to help others daily who also have Periodic Paralysis. After not being able to find the information or help we needed, we created the on-line independent organization, the Periodic Paralysis Network, Inc (PPN) to provide those things to others. The PPN is also patient-safety-related due to the serious nature and potential life-threatening symptoms and side effects of this condition if it is not treated correctly. We have an informative website with links to a forum with a blog and discussion groups designed to provide support, education and advocacy. We help others by educating them on the natural methods we have discovered and use. We have over 475 members from all over the world that are seeking help for themselves, their children and entire families and are unable to find it anywhere. We provide ideas on how to find doctors, get a diagnosis, get the proper help in the ER, how to discover their triggers and much more.

We would like to raise awareness of Periodic Paralysis for all medical professionals by providing them with the up-to-date and correct information found in the only books written specifically about PP, “Living With Periodic Paralysis: The Mystery Unraveled,” and “The Periodic Paralysis Guide And Workbook,” and The Bill of Rights For Patients With Periodic Paralysis,” which we recently published, so that patients suffering from this cruel condition can be recognized, diagnosed and treated appropriately on a daily basis and in emergency situations in a timely manner in order to avoid harm, permanent disability and unnecessary death. We are seeking the funds to do that by purchasing copies of this book and providing them in emergency rooms, fire departments, hospitals, doctor’s offices, medical and nursing schools, social worker offices and more. We also need funding to translate the book into other languages for those families in other countries who do not read, or speak English. Proceeds from the sale of the book go into the company, but we lack enough funding to do what is needed.

In conclusion, please help us to keep individuals who have Periodic Paralysis safe from harm and possible death by making it possible to provide education to the medical professionals in their lives. And, please spread the word about Periodic Paralysis, a very real and serious medical condition.

For more information about Periodic Paralysis please visit:
Periodic Paralysis Network, Inc at: www.periodicparalysisnetwork.com
and
Blog at: http://livingwithperiodicparalysis.blogspot.com/

Thank you,
Susan and Calvin Hunter


Contact us: periodicparalysisnetwork@gmail.com