Callie Hart's Story

I don't really know where to begin. It was senior year of high school, in MA, and senior prom was coming up in a few months. For some reason, I noticed my mouth started to feel and look different. It was really hard for me to close my lips and I felt tingling. It was really hard for me to speak because I couldn't close my lips. It was hard for me to drink or eat because I couldn't close my lips there either. I ignored it though, stubborn as I was, and next thing I knew prom comes around the corner. I noticed in my pictures I couldn't even smile because I was too ashamed of my mouth and how weird it looked. My family couldn't stop commenting on my mouth, but I didn't know what to say because I didn't know why my mouth was being the way it was. My cousins and sisters would bully me and tease me about my mouth. I was so stubborn that I didn't really do anything about it until a year later when I was a freshman at University of Maine, but more on that later. Over the summer, before school started, I noticed I was getting really weak, all over. I felt very, very fatigued and like I didn't want to do anything. I was so weak that it was hard for me to walk, climb stairs, lift things, and just be active. I couldn't do anything anymore. I felt so pathetic, depressed, fatigued, and alone. I had other symptoms like blurred vision, shortness of breath, impaired speech, and difficulty in swallowing.

I started to move into my dorm and it was hard for me to lift my things. I was so weak that it was hard for me to hold 2 pillows! I knew something was wrong. Then one day, it hit me. I was trying hard to walk up the stairs as I was heading to class, suddenly my legs collapsed, and I just fell on the top of the stairs. I tried to get up but I couldn't. There was a railing so I tried to pull myself back up on my feet, and I couldn't because my arms were too weak to lift me up. Then my friend saw me and helped me up. After class, I went straight to the health center. The first doctor I saw thought I had MS, and then finally this other doctor, who happened to be a neurologist, said that I had Myasthenia Gravis (MG).

I made an appointment with a neurologist and got tested, and after some blood work, an EMG, and a CT scan I was diagnosed. I had to be sent to the hospital right away. I was in the hospital for about a week as they tested me. The neurologist put me on two medications, prednisone and Mestinon.

After two years, I noticed my MG coming and going. Sometimes I didn't even realize I had it. Sometimes it hit me all at once and I couldn't do anything. Sometimes I was just too tired to get up. I would try to get up out of bed, and I just couldn't, I was struggling. Other days, it was hard for me to just put a pony- tail in my hair because I couldn't reach that far back and I was too weak. I was very uncomfortable about smiling and so I got very uncomfortable when someone wanted to take a picture.

Finally, after another year or two went by I realized I had to do something. So, I called my neurologist and he said another option was to get a thymectomy. I agreed to it and did the surgery. I felt a lot better about myself and I could do things that I couldn't do before. As of right now, it has been 5 years and I am still weaning off prednisone and Mestinon but my life has dramatically changed. I work now as a Lead Teacher in Lansing, MI and feel as though I have my life back.

It's really hard to love life when you can't really make life happen. When you’re just in bed and can't move or you can't do certain things you want to do, it can be frustrating. I'm still young, I should be healthy!

You never know what will happen to you, so try and live life to the fullest, and be brave.