Periodic Paralysis Awareness
My name is Susan Q. Knittle-Hunter. I am the co-founder, co-creator and co-managing director of the Periodic Paralysis Network, Inc (PPNI). I am 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of PP do not know the actual facts about it, understand it or recognize it because they rely on and refer to old, outdated and wrong information.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.
I am also hoping to raise money to fund very expensive devices needed by individuals with Periodic Paralysis, which aid in the diagnosis and treatment of this condition. Insurance will not pay for them. I know of these needs from my own personal history, those of my family members and from others around the world who also suffer the effects of this cruel disease and contact me daily through the Periodic Paralysis Network for information and help.
I am 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 want this to continue 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. This can take many 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 and on a cellular level, triggered by things such as sleep, exercise, sugar, salt, most medications, stress, cold, heat, anesthesia, adrenaline, IVs, etc., potassium 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.
One of the largest concerns for individuals with Periodic Paralysis is dealing with medical care, emergency situations and surgery. This begins when the EMT’s and paramedics are called to treat these patients during the emergencies, which may accompany the sudden partial or full-body paralysis. It continues upon arrival in the ER and the possible subsequent hospitalization. In these situations the individual becomes immediately at-risk. The medical professionals do not recognize or refuse to recognize it based on out-dated information or ignore the instructions of the patients, if they are able to speak, or their family members. They will place the person on a saline or glucose IV, and administer drugs, all of which can actually exacerbate the symptoms, cause irreversible damage or possibly lead to death. Anesthesia must also be avoided. In each of these situations an individual is in great risk of harm even death if the medical professionals do not have the correct information.
Despite being nearly totally disabled due to the lifetime of previous mis-diagnoses and mis-treatments, 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 (PPNI) to provide those things to others. The PPNI 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 300 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 book written specifically about PP, Living With Periodic Paralysis: The Mystery Unraveled, 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 ER’s, 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.
Periodic Paralysis is a condition, which needs to be treated in natural ways, based on symptoms, most importantly by monitoring all vital signs at home including and especially potassium levels. The results of these readings aid in knowing how to diagnose and treat the symptoms. The only potassium readers available for use in this manner are not medical devices and are not covered by medical insurance. Patients must pay for these hand held devices out-of-pocket. They are approximately $350.00 each. Many families cannot afford these devices. We would like to be able to provide these or help families with the costs of purchasing them.
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 by providing them with the much needed potassium readers. 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
A few quotes from our members:
"I have Periodic Paralysis, NOT conversion disorder. My symptoms are real, my pain is real."
"I have Periodic Paralysis, but my doctors refuse to educate themselves on what it is."
"It's not in my head, it's in my genes!"
" Periodic Paralysis is like waking up in the middle of major surgery, but you can't scream."
”I have Periodic Paralysis and 13 other conditions because of the improper treatment of my doctors.”
”I have to pay for medical insurance, but I can get no help from doctors!!!
"I have Periodic Paralysis, and no one will treat me."
"I have Periodic Paralysis please diagnose me."
"Please DO NOT give me an IV, anesthesia or any medications.”
”I have Periodic Paralysis. Please diagnose me based on my symptoms.”
”I have Periodic Paralysis. Please protect me from my doctors.”
”I have Periodic Paralysis, Please help me to find a doctor who cares.”
Map of our Periodic Paralysis Network Members around the world
The Book about Periodic Paralysis
