We need your help!
For the past 20 years I’ve been living with Myasthenia Gravis (MG), an autoimmune, neuromuscular disease that can cause severe muscle weakness and strikes roughly 70,000 Americans. Little did I know at the time that this “chronic” disease would be life altering, affecting not just my overall health but every aspect of my life.
It all began when I was just sixteen years old when I suddenly began experiencing crippling weakness. For years I was unable to perform even the basic human functions like climb stairs, walk, speak, smile, stand or swallow my own saliva. Even though I started to take medication to help alleviate the weakness, it failed me and I had no choice but to go on life support three times. It’s humiliating and humbling to lose control of your body and even worse when the world around you has no idea what MG is and how it can affect you.
With the aid of new medications, over the years I was lucky enough to take control of MG and live my life with minor weakness. But I am not cured and every day I speak with newly diagnosed patients who are just beginning the fight that I have fought. I want to help them – as well as myself and therefore I began the first annual MG Walk-A-Thon twelve years ago. The idea of a Walk-A-Thon came to me in January ’98, during one of many stays in ICU. I was so weak at the time that I couldn’t walk, talk, or even eat. In actuality, I was just waiting to see if my breathing would quit – causing me to go on life support once again. To help take my mind off of my grave situation, I began the preliminary plan to execute a Walk-A-Thon for MG.
Just five months later I was able to gather friends, family and even strangers to execute that first Walk-A-Thon. The results – in my opinion – were phenomenal. Just over 100 people attended. Today – the MG Walk-A-Thon has grown. Close to 300 walkers attended last year and to think – it all started when I was in ICU.
This year the 13th Annual Myasthenia Gravis (MG) Walk-A-Thon is set for Saturday, May 8th beginning at 10AM in my hometown of Wayne, NJ. Participants are asked to arrive at the parking lot at Immaculate Heart of Mary Church and walk one lap around Pacakanack Lake – just less than three miles.
We need your help! Your support will help many who feel isolated and alone as they suffer this perplexing and often debilitating disease known as Myasthenia Gravis.
Every Step Counts!
Kelley DeVincentis
