Thank you for visiting my "MG Walk" personal fundraising page! Here is a little info regarding my experience with MG...
I was diagnosed in 2013 with Double Seronegative Myasthenia Gravis. Since then, my life has been interesting, to say the least. I have spent every day trying to live as normal a life as possible while coping with this disease. I had never even heard of Myasthenia Gravis until I got sick. My worst day was going into the hospital while experiencing double vision, slurred speech and high blood pressure and not knowing what was wrong with me. Doctors running around, assuming I had a stroke, and me trying to tell them that they were wrong. With my doctor’s advice, I got connected with Mayo Clinic. It took a few months and a lot of testing to diagnose my condition. My neurologist put me on a protocol of Prednisone and Cellcept, with some results, but my slurred speech continued. In December of 2015, I had my first Rituxan infusion and the second in January 2016. I was due to have my third last year, though sadly, it was denied by my insurance company. The treatments are $26,000 per infusion, and like most of you, that is not affordable. I believe that everything happens for a reason and maybe I was meant to raise awareness by experiencing MG firsthand. As most of you know, MG is a rare disease and does not get the media attention it deserves. My goals are to help raise awareness and donations so that our treatments will be more affordable and our insurance companies will be less hesitant to cover them.
Wanting to know more about this disease, I got as much information as I could and got educated. I truly believe that knowledge is power. I also joined a few support groups and got in contact with people who were going to guide me through this one way or another. With the grace of God and my family and friends, I have been able to live a fairly normal life and keep my full time job. I am happy to report that I am currently in remission, though the addition of a pacemaker makes it a challenge.
I am excited to be supporting the Myasthenia Gravis Foundation of America (MGFA) through the MG Walk. The MGFA is the only national volunteer health agency in the United States dedicated solely to the fight against myasthenia gravis.
MGFA is committed to finding a cure for myasthenia gravis and closely related disorders, improving treatment options, and providing information and support to people with myasthenia gravis through research, education, community programs, and advocacy.
Please register to walk with me OR make a pledge to help me reach my goal!
Together We Can Make A Difference!