Welcome to Periodic Paralysis Network, Inc.
Hello, my name is Susan Q. Knittle-Hunter, I have a very rare, debilitating, hereditary and difficult to diagnose
disease called Periodic Paralysis. I was 62 when I was finally diagnosed, 3 years ago. It is a mineral metabolic
disorder called an ion channelopathy. It is often misdiagnosed and mistreated, thus causing more damage or possible
death to the person with it. There are several types and the form I have, a variant of Andersen-Tawil Syndrome, is
the most rare and the most serious type. (Long QT interval heartbeats can accompany the episodes.) (Specialists say
there are only about 100 of us worldwide diagnosed but it would appear there are many more than that who are not
diagnosed or misdiagnosed.)
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. Due to these complications, it is extremely important to avoid the episodes.
Gradual, progressive, muscular weakness can also affect the individual with this condition.
There are no known cures, but there are treatments/drugs for some forms, which can be and are successful for some
The type I have, however, has no traditional medications, which can alleviate the symptoms, but by
avoiding the triggers and by using some natural methods, the number of paralytic episodes can be reduced
and the severity of the episodes can be lessened. Due to many wrong diagnoses and improper medications, I am severely
disabled in a power wheelchair and on oxygen therapy 24/7. I was having episodes 4 to 5 times a day but now, with
the natural methods have been able to reduce the number to about 1 or 2 a month with less severity and for shorter
periods of time.
Although I am ill myself, my husband Calvin and I, both retired special education teachers with degrees in psychology
also, have created this independent organization, the Periodic Paralysis Network, which is patient-safety-related
due to the serious nature and potential life-threatening symptoms and side effects of this condition if it is not
We have a forum containing 3 distinct discussion groups, a blog, 2 Facebook pages, a Pinterest site and we recently
published a book, Living With Periodic Paralysis: The Mystery Unraveled, which is an extension of our website and
the only book written about it. We work towards the improvement of the quality and safety of patients from all
over the world with the various forms of Periodic Paralysis. Our focus is on educational resources to build
self-reliance and self-empowerment and to prevent possible harm from improper treatment. Our approach to treatment
focuses on the self-monitoring of vitals and the management of symptoms through natural methods. We also offer
strategies to understanding the disease, getting a proper diagnosis, managing the symptoms, and assisting caregivers
and family members.
We get new members almost daily from all over the world (Iran, Ukraine, Turkey, Denmark, Wales, Netherlands, Belgium,
Canada, Finland, Australia, Mexico, Argentina, Ireland, Scotland, Bangladesh, Pakistan, Philippines and more) 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 more.
In our book, we share my story of near death due to misdiagnoses and improper treatment of this mysterious disease,
to hope through natural management techniques. We bring awareness of PP to others who may have it and to doctors for
more timely recognition, diagnosing and correct treatment. Our book highlights problems within the medical system today
and shares insight into the social and psychological aspects of living with a rare, chronic and progressive disease.
It is our hope that the medical professionals dealing with individuals with Periodic Paralysis may come to our site
or read our book and learn more about how to recognize, diagnose and properly treat their patients in a timely manner.
Please join us on one or all of our sites:
Susan Q. Knittle-Hunter
Periodic Paralysis Informational Video:
Periodic Paralysis Blog:
Periodic Paralysis Support
and Education Group:
Periofic Paralysis Book Discussion Group:
Periodic Paralysis Network Genealogy:
Periodic Paralysis Network Page:
Periodic Paralysis Network Pinterest:">
Susan Q. Knittle-Hunter and Calvin Hunter Authors Page:
Read our story in an article published by "Living on the Peninsula, Fall 2013" (page 33).
Living on the Peninsula, Fall 2013
living with Periodic Paralysis
The Mystery Unraveled
by Susan Quentine Knittle-Hunter
and Calvin Hunter
living with Periodic Paralysis is a must read for anyone suffering from the devastating effects of the mysterious
disease called Periodic Paralysis. After nearly dying and after many years of misdiagnosis and mistreatment by medical
professionals, Susan and Calvin uncover the cause of her illness. Based on a lifetime of experience and after
nearly 3 years of experimentation, detailed research and tremendous study, they share their discoveries.
living with Periodic Paralysis unravels the inherent mysteries of this rare condition.
Publication Date: May 09 2013
ISBN/EAN13: 1484062248 / 9781484062241
Page Count: 444
Paperback: 6" x 9"
Price: $24.95 USD
Order Your Copy Here
Periodic Paralysis is a rare, hereditary disease characterized
by episodes of muscular weakness or flaccid paralysis without the loss of
sensation or consciousness. It is a channelopathy; a disease involving dysfunction
of an ion channel for potassium, sodium, chloride and calcium. There are
three types: Hypokalemic Periodic Paralysis, results from potassium moving
from the blood into muscle cells in an abnormal way. It is associated with
low levels of potassium during paralytic episodes. Hyperkalemic Periodic
Paralysis results from problems with the way the body controls sodium and
potassium levels in cells. It is associated with high levels of potassium
during paralytic episodes. In Andersen-Tawil Syndrome ATS, paralysis results
when the channel does not open properly; potassium cannot leave the cell.
This disrupts the flow of potassium ions in skeletal and cardiac muscle.
During paralytic episodes, ATS can be associated with low potassium, high
potassium or shifts in the normal ranges of potassium. Periodic Paralysis
is mineral metabolic disorder.
More about Periodic Paralysis
The Periodic Paralysis Network was created to provide
a hands-on approach to understanding the disease, getting
a proper diagnosis, managing the symptoms, and assisting caregivers
and family members. We will attempt to discuss issues relating to Periodic
Paralysis in practical language. Our hope also is that the medical professionals
dealing with individuals with Periodic Paralysis may come to our site
and learn more about how to recognize, diagnose and properly treat their
patients in a timely manner.
Release, 03-19-2011, Daily Herald, Susan Hunter
"Woman tracks down cause
of her paralysis;"
KTVL News 10, May 17, 2011 4:55 AM Press Release
"Susan Knittle-Hunter is thrilled to be Tuesday’s Facebook Friend of the Day."
She is a retired special education teacher
that lives in Grants Pass with her husband. She has three children and five
grandchildren. Knittle-Hunter says she is very interested in local and world news. Even more, she spends a lot of time on
Facebook interacting with her friends and family. But her time on the computer isn’t all about news. It is about research
and writing. Knittle-Hunter has a very rare disease – Andersen-Tawil Syndrome, a form of Periodic Paralysis. Doctors have
only diagnosed 100 people in the world with it. Knittle-Hunter has created a website about her disease and is writing a book.
The site is designed to created a hands-on approach to understanding the disease, symptom management and getting proper
diagnosis. She said she has been ill since she was a child and medical professionals misdiagnosed her for many years.
“I was not diagnosed in a timely manner and am so ill now that all I can do is sit in a recliner,” Knittle-Hunter said.
“I become paralyzed periodically due to potassium shifting in my muscles.” She shares her story on her website."
The information included in this Web site
is intended for informational purposes only. We welcome everyone to share
in the open and free exchange of knowledge and ideas without pre-conditions.
All of the information and ideas originally produced by Periodic Paralysis
Network is protected under US.Copyright