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.
Since realizing 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.
Too many 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.
Periodic 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 this condition.
More education 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 Paralysis include:
Our Periodic Paralysis Network Inc Website:
After receiving 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
The Periodic Paralysis Guide And Workbook:
A Bill Of Rights For Periodic Paralysis Patients
Living With Periodic Paralysis: The Mystery Unraveled
The Periodic Paralysis Guide And Workbook:
Be All You Can Be Naturally
A Bill Of Rights For Periodic Paralysis Patients
What is Periodic Paralysis?: A Disease Like No Other
We 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.
Of 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.
One 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 condition.
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.
Our Periodic Paralysis Network Inc Blog
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 and learn.
Our Periodic Paralysis Network Inc Facebook Page
The ‘Periodic 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.
Our Periodic Paralysis Awareness Day Page
Periodic Awareness Day Feb 7
Several years 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.
My son has Hipo KPP attack now. 7 February 2021.ReplyDelete
Please join our Periodic Paralysis Network Support Group. We have much information to share to help you with your son.