Once I realized that I had a form of Periodic Paralysis, I researched everything I could find about it and set out to get a diagnosis. The little information I found on-line was scattered and difficult to understand. I joined the few support groups and listservs available at the time but found them lacking in any kind of real support, information and absolutely no advocacy. In fact I was met with resistance. When I finally got diagnosed with Andersen-Tawil Syndrome, I was actually scoffed at because my diagnosis was not genetic.
The story of my diagnosis is long and involved, but Calvin, my husband, and I did manage to secure a diagnosis after unbelievable resistance and much work on our part.
The focus of our corporation 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 are a patient-safety-related organization and advocate for our members all over the world. We provide hope through education of all issues related to Periodic Paralysis, open and free discussion of thoughts and ideas, encouragement, support, sympathy, empathy, validation and advocacy. We continue to do research and provide the latest information to our members. Everyone is welcome. Members will also gain information and knowledge about all aspects of Periodic Paralysis. Members ask questions and share ideas and support. We are usually on in real time, answering questions and providing support as needed for our members.
We provide hope to individuals with various forms of Periodic Paralysis through support, education and advocacy. We have a website, a blog and a forum with three distinct discussion groups, and a book, “living with Periodic Paralysis” and other educational activities.
The Periodic Paralysis Network exists to assist individuals who have Periodic Paralysis with support, education and advocacy and by providing them with a hands-on approach to understanding the disease, getting a proper diagnosis, managing the symptoms, and assisting their caregivers and family members.
In the next few months you may notice some changes in design on our website, blog, and groups. Calvin is creating a new logo. Our second book, a user-friendly workbook, is nearly finished and we hope to publish it before the end of the year. We are also working on some fund-raiser ideas. We hope to raise money to cover the costs of putting our books in the hands of doctors, ER’s, EMT's, nurses, libraries, medical schools, nursing schools and more.
Thank you all for your support!!