This blog was created and designed to educate the world about Periodic Paralysis a rare, inherited, hard to diagnose, debilitating and cruel mineral metabolic disorder. I have two variants of this condition and my life is filled with constant challenges as I attempt to manage my symptoms to stay alive. My husband and I are co-founders of the Periodic Paralysis Network, Inc. This blog is an extension of our educational and support network at www.periodicparalysisnetwork.com .
Friday, July 31, 2020
Providing Awareness of Periodic Paralysis through A.S.E.A.
Awareness is a
sense of understanding, knowing, recognition or mindfulness of something. At
this time, among most people in the world, doctors, medical professionals and
government entities, the term Periodic Paralysis has no meaning. It is not
recognized, known about or understood by those in authority who should be aware
of it. This needs to be changed worldwide and we are here to do it.
I had a form of Periodic Paralysis (PP), after over fifty years of searching
for the cause of my unusual, debilitating and progressive symptoms, I knew
there was very little information available about this rare medical condition.
It was obvious that few doctors knew about or understood the condition either.
Through my research, I discovered it takes nearly a decade of graduate school
to become a doctor. During those years of training, unfortunately, Periodic
Paralysis is mentioned in one or two paragraphs and in those paragraphs it is
described as so rare that a doctor will never see a patient with it in his or
her lifetime or years of practice. This is a serious disservice to those of us
who have the condition. As I researched
and learned more, I also discovered most all of the information found on-line
was old, out-dated, misleading or wrong. Sadly, this is the information being used
by many doctors.
individuals are suffering needlessly and even dying due to this misinformation,
under-recognition, under-diagnoses and misdiagnoses. When someone suffering the
effects of the cruel condition of Periodic Paralysis mentions the term
‘Periodic Paralysis’ blank stares, and lack of understanding are the norm,
especially by medical professionals. Very few people on earth have heard of it
or know about it. This has to be corrected.
Paralysis is a serious mineral metabolic disorder, which everyone should be
aware of and understand. However, at this time, among most people in the world,
doctors, medical professionals and government entities, the term Periodic
Paralysis has no meaning. It is not recognized, known about or understood by
those in authority who should be aware of it. Change is necessary worldwide.
When the terms
multiple sclerosis, muscular dystrophy, ALS (Lou Gehrig’s disease), cancer or
leukemia are heard someone automatically visualizes an individual whose health
is compromised, probably in some pain, maybe in a wheelchair and unable to go
about normal daily duties, unaided. The futures of these individuals are
uncertain. Most people are moved to sadness and concern for those individuals.
Family, friends, churches, and even entire neighborhoods and communities
readily offer help and support. This, however, is not the case for people with
the varying forms of PP, however, it should be.
It was our hope
that someday when the words “Periodic Paralysis” are heard everyone would
understand and instantly visualize the seriousness of this condition…an
individual becomes severely weak from muscle weakness or tightness or are
suddenly totally paralyzed, unable to walk or talk and in fear because his or
her heart is racing and beating irregularly, blood pressure is dangerously high
or low, breathing is difficult and may stop, oxygen may be very low, choking
may occur, and he or she may die during the episode from a heart arrhythmia
and/or respiratory or cardiac arrest. He or she may look asleep or unconscious,
they can hear everything going on, but cannot say a word. The individual is
vulnerable and at the mercy of others and ‘totally alone in the dark.’ Over
time, gradual, permanent muscle weakness sets in and the person becomes
disabled. The future of these individuals is as uncertain as in the other
severe medical conditions.
As it turns out,
after nearly a decade of providing, support, education and advocacy for people
with all types of Periodic Paralysis around the world, we know that PP is not
all that “rare,” but rather, as mentioned previously, it is under-recognized,
under-diagnosed and misdiagnosed. It takes an average of twenty years for an
individual to receive a diagnosis. (My own diagnosis took over 50 years!) Many
die before they ever receive a diagnosis or even after due to inappropriate
care. This is unconscionable and unnecessary. This would not be the case if all
medical professionals understood Periodic Paralysis and knew how to recognize
and training is needed for students in medical school and for all other medical
professionals including nurses, EMTs, paramedics, social workers, teachers, lab
technicians and more. Periodic Paralysis needs to be as commonly understood as other
medical conditions such as multiple sclerosis, muscular dystrophy,
fibromyalgia, heart disease, diabetes, and Lou Gehrig’s disease.
We created the Periodic Paralysis Network hoping to
provide the correct and vital information for people with PP, their family
members and caregivers and all medical professionals. We hoped as well to bring
awareness to everyone in the world. We are here and doing this through our
A.S.E.A Program. We are bringing Awareness to everyone in the world through
Support, Education and Advocacy. Our features and services providing Awareness of Periodic
my diagnosis for Andersen-Tawil Syndrome on February 7, 2011, my therapist, Rosie,
who was instrumental in helping me to get diagnosed and supported me through a
few years of uncertainty, hospitalizations and hell, suggested that we write a
book about Periodic Paralysis and all that we experienced before getting the
diagnosis. She thought that the world should know about PP and what we went
through; perhaps we could help others in the same situation. We decided after
much discussion about our education, skills and teaching experience, to create
the Periodic Paralysis Network first to do just that and then later set out to
write our first book. We have now grown into a large forum with many features
and services, each created as the need arose.
Our Periodic Paralysis Network Inc Books
Periodic Paralysis: The Mystery Unraveled
The Periodic Paralysis Guide And Workbook:
Be All You Can Be
A Bill Of Rights For Periodic Paralysis Patients
What is Periodic Paralysis?:
A Disease Like No Other
created and published our books, taking years to research and write, with the
hope that students in medical school, all medical professionals, including
nurses, EMTs, paramedics, social workers, teachers, lab technicians, other PP
organizations, and more would read the information to better understand,
diagnose in a timely manner, and treat patients with all forms of Periodic
Paralysis more appropriately and with compassion.
course the information in the books is mainly for anyone who has this condition
to be able to fully understand everything about Periodic Paralysis from what it
is, to how to get diagnosed, to how to manage the symptoms. Every issue related
to Periodic Paralysis is covered in the books.
of them, What Is Periodic Paralysis?: A Condition Like No Other,
was written especially to bring awareness of the condition to others. It
was designed for those with Periodic Paralysis to be given to doctors,
teachers, neighbors, babysitters, family members and more to inform them about
The sale of our
books (and donations) is how we fund our organization. Every penny from the
purchases goes right into PPNI to cover our fees, licenses and expenses.
In the beginning
the members asked that our Periodic Paralysis Network Support Group be private
due to the medical nature of the issues that would be discussed. They also
asked that no professionals of any type; doctors, nurses, social workers, etc
be admitted to the group as observers. They desired the group to be a ‘safe’
place where they could discuss their feelings, thoughts, ideas and more without
the judgment of professionals. Due to this, we wanted a place where Family
members, friends, doctors, nurses, teachers, and more could go to learn more
about Periodic Paralysis. We created the public ‘Living With Periodic
Paralysis: The Blog’ in order to share our information and discoveries with
everyone around the world. It has a translator so anyone can read the content
Paralysis Network Inc Facebook Page’ was also designed to bring about more
awareness of Periodic Paralysis. Anyone can join. Many articles and posts are
shared about Periodic Paralysis as well as other issues related to it such as
chronic illness, invisible diseases and co-existing conditions. Inspirational
posts are included as well.
ago, one of our members inquired about an Awareness Day for Periodic Paralysis.
One did not exist, so we set out to create one. We decided to use the date of
February 7, the day I finally received my diagnosis after over 50 years. We
created the ‘Periodic Paralysis Awareness Day Page.’ Each year for a
month before that date, we share posts designed to bring awareness of Period
Paralysis on that page. Anyone can join it and the posts are meant for sharing
by our members to bring awareness of it to their family and friends.