My Biography:
Periodic Paralysis:
Hello, I am Susan Q. Knittle-Hunter. I am passionate about helping others with Periodic Paralysis and sharing information about it. Periodic Paralysis is very rare, hereditary, debilitating, difficult to diagnose, mineral metabolic disorder, also known as an ion channelopathy. I have a form of it and was 62 years old when I was finally diagnosed, three years ago, after suffering the effects of it nearly my entire life.
My
husband and I are the founders and creators of an on-line 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 treated correctly. We have a website and
a forum with a discussion board and support group on Facebook to help others
with support and the natural methods we have discovered and use. We get new
members almost daily from all over the world (Iran, Ukraine, Turkey, Denmark,
Wales, Netherlands, Canada, Finland, Australia, 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 much more.
Periodic
Paralysis is often misdiagnosed and mistreated, thus causing more damage or
possible death to the person with it. There are several types and the type 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. 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 individuals.
The
type I have, however, has no traditional medications, which can elevate 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 four to five times a day but now, with the natural methods have been
able to reduce the number to about one or two a month with less severity and
for shorter periods of time.
We
have written and published the first book about it, entitled living with Periodic
Paralysis: The Mystery Unraveled.
It was released in May 2013. Besides all aspects of Periodic Paralysis,
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.
(The lowercase "l" on "living" in the title is not a typo but used to signify the term "living" as being used loosely in terms of this condition; patterned after the style of the poet and author E. E. Cummings.)
Sotos Syndrome:
As a young woman my second child was born with another very rare genetic disorder, Sotos Syndrome. It is also known as Cerebral Gigantism. It is a little known and very rare, genetic, overgrowth disorder.
Sotos is manifested by physical growth, which is accelerated; hands and feet, which are abnormally large; head and facial features which are very distinctive; a high arched palate; developmental delays and poor coordination and muscle tone.
Sotos Syndrome was described first in 1964 in the New England Journal of Medicine and in 1994, there were fewer than 200 known cases worldwide. Today, about one in fourteen thousand children are born with Sotos Syndrome. This condition is not life threatening; individuals with it may live a normal life span. There is no established method of treatment. It is based on the symptoms that occur.
Although
a very rare condition, much is known about Sotos Syndrome today. When my
daughter was born on Christmas Day 45 years ago, not much was known about it.
It took four years to get a diagnosis and she was one of the first to be
recognized with it. She was diagnosed based on her symptoms and
characteristics. She suffered greatly due to many of the accompanying features.
She was born with a deformed and dislocated hip, loose ligaments and most all
of the issues described.
Our
journey together was not an easy one. I was very alone and very little
information existed at that time about Sotos Syndrome. She only lived to be
five years old and died due to negligence and malpractice at the hands of the
doctors who treated her in an emergency room from sepsis; poisoning in her
blood system.
I have written a book about my daughter and Sotos Syndrome; her life and death and what it meant to me and how it changed my life. Although this happened so long ago, people are still dying from the misdiagnosis of sepsis, so the message is as important today as it was forty years ago.
If you want to know more about Sotos Syndrome you may wish to read my book: Sotos Syndrome: A Tribute to Sandy published in paperback in December 2013.
Living
In The Woods:
As a child, living in a busy and crowded suburb of Los Angeles, California, I dreamed of living in the mountains. I wanted to live where I could experience the four seasons; delicate snowflakes drifting to the ground in Winter, the forest renewing itself in Spring, the carpet of wildflowers blanketing a meadow in Summer and the rainbow of colored leaves in Fall. I wanted to live where I could experience peace, quiet and clean air. I wanted to live where I could see blue skies and green trees. I wanted to live where I could hear birds singing, a breeze tickling the pine needles and a brook babbling over rocks. I wanted to spend "Zen" moments with the deer, elk and moose, the chipmunks, squirrels and birds. I wanted all of this for my children, my grandchildren and great-grandchildren.
When
I met Calvin, I shared my desires with him. Much to my surprise, he had the
same dreams and desires! We chose to travel "The Way" together, and
to build this life in the mountains for ourselves. Together, we worked hard, we
sacrificed, we dug, we hammered, we lifted, and we cut. We were together every
step of the way. Now, together, we experience our spring, summer, fall and
winter in the mountains. We experience all there is to experience, here, to the
fullest.
Calvin kept a journal and I took countless photographs of the surrounding area and at every phase of the construction. Moments In Time: At Home In The Woods is a photographic and written chronology spanning 30 years.
I love Calvin with all of my heart and soul and thank him for making my dreams come true. This book is the culmination of our dreams together.
Education
and Career:
After
my disabled daughter passed away, I attended the University of Utah and
graduated with degrees in Special Education and Psychology. I taught children
of all ages and disabling conditions in Utah and Wyoming. I was a consultant on
the state level for the States of Utah and Wyoming working with disabled
children and adults and their families. I was a program coordinator for an
adult habilitation program in Wyoming and designed several community adult
living programs. I created an instructional manual, Creating Program
Plans for MR/DD Adults, and presented workshops using the manual. After
I became disabled myself with Periodic Paralysis and I had to give up her
career devoted to improving the lives of challenged children and adults.
Today:
Calvin and I are now retired and enjoy the peace and beauty of the forest in our new home on the Olympic Peninsula in Washington. We live with our two spoiled cats and plenty of wildlife. We are presently writing our next books and continue to work daily to help others with Periodic Paralysis. In our spare time, Calvin enjoys working with wood and tends their organic garden while I enjoy genealogy research and reading historical romance novels
For more information and Connections:
Wego Health Activist Nominee: https://awards.wegohealth.com/nominees/periodic-paralysis-network-19
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