"I am 23 years old and was diagnosed at age 8 with the neuromuscular disease called Myasthenia Gravis. It is an autoimmune system illness that progressively has gotten worse over the last 15 years to the point of putting my life in jeopardy on several different occasions. It causes muscle weakness in all my muscles and It affects my walking, chewing, swallowing, breathing, eyesight, talking, coordination, and physical stamina. It also makes me consistently weaker and less able to do for myself as time has gone on. Over the years we have tried every possible treatment for this disease you can think of, with little or no success.
In January of 2004 I was put in ICU on a respirator which breathed for me due to my Myasthenia Gravis, which was in crisis. In June I had another similar incident and had developed pneaumonia and was yet again put back in ICU on a respirator and told I wasn’t going to make it. All my friends and family were told to come say goodbye to me. It was devestating for them, but miracles happened, and I recovered yet again.
Ive had over 100 plasmapheresis treatments (see MYASTHENIA GRAVIS SECTION FOR DETAILS) in my life. I take a string of medications which include high dose steroids and immunnosupressants which are hard on the body and create bad unwanted side affects. I have done chemo therapy to try to help this disease, but with little improvement. Because of the high dose steroids and a deadly eating disorder (Compulsive Overeating and Bulimia) I have gained an ungodly amount of weight. I am in an electric wheelchair because of my disease since I was 9 years old.
There is a surgery that can help my disease called a Thymectomy which removes the thymus gland located behind the heart . It is a major surgery and I had it when I first got sick at age 8 (had the surgery on my 9th birthday.) Unfortunately the thymus has regrown back which worsens my disease, but at this point and stage there is no way to remove it and removing it would not be very beneficial. I have undergone 20 Total Body Irradiation treatments which has not improved my disease, and was considered experimental. My disease has progressed throughout the years, and is attacking my respiratory to the point where I go to the hospital Emergency room frequently with respiratory failure and even the slightest cold/flu/infection or even stress can trigger an exasurbation of my MG. I use a bipap at night for my breathing and also in the day sometimes when it is labored.
It has been a struggle everyday just for me to live a decent quality of life and am not guaranteed that I will live a full life, but I never give up hope because at the end of the day, the time here i spend with loved ones, giving inspiration and motivating change is completely worth it, even if I die tomorrow. I believe there are no excuses in life, and there are people out there suffering far worse then me. It could always be worse so keep the faith.!"