Mighty Member since April 2016
My name is Susan Q. Knittle-Hunter. I have a medical condition called Periodic Paralysis. It is a very rare, debilitating, hereditary and difficult to diagnose disorder. I was 62 when I was finally diagnosed, 6 years ago. It took over 50 years for me to obtain the correct diagnosis! My husband Calvin and I are retired Special Education Teachers, and the Co-founders and Co-directors of an independent organization, the Periodic Paralysis Network, Inc. (PPNI). We have a website www.periodicparalysisnetwork.com with a forum containing three distinct discussion groups and a support, education and advocacy group with over 625 members from around the world on Facebook, a blog with over 140 articles and we have written and published four books about this medical condition. Our organization is patient-safety-related due to the serious nature and potential life-threatening symptoms and side effects of this condition if it is not recognized or treated correctly. We, at the Periodic Paralysis Network, are attempting to bring awareness to this cruel and unusual medical condition for proper recognition, diagnosis and treatment in a timely manner.