Katie's Mystery Disease

Hello, everybody. Thanks for coming on over to learn about me...and the mystery disease!

By the time I was eight years old, I had broken about 12 bones, my hair was falling out, and I was tired all the time. I live in Japan, and since nobody there seemed to know what was going on, including the doctors, I was sent to Hawaii to go to the Pink Hospital. At least that was MY name for it, since it was pink and very large. Forget about beaches. When I spent MY six weeks there, I was too busy being poked and prodded, because I had about a zillion tests. So mainly the time seemed like a total and complete HELL!


Well, by the time I got to third grade, the mystery was solved. The doctors told me that I had something called Graves Disease. This is a medical problem that has to do with a part of the body called the thyroid gland. Bet you didn't know that you even had one of those, right? It's the part of you that gives you your energy, among other things. The doctors told me that I needed to have all of the tests because Graves Disease is rare in younger kids. They wanted to be sure of the diagnosis. 

My chart

I ended up taking this stuff called radioactive iodine. Doesn't that sound scary? Like I must glow in the dark now? Well, I don't. What it's supposed to do is to stop the thyroid gland from sending out so much hormone, so that I would feel normal again. But instead, when I got back to Japan, I couldn't walk or anything. I reminded myself of a slug - lazy and always tired. But I just couldn't help the way that my body felt-my thyroid still wasn't working right. Because it was six months into the year when I went to Hawaii, by the time I returned and tried to go back to school, I was too tired to walk, to sit in my seat, or actually to do just about anything! The first day back at school the kids thought that I must have some kind of contagious illness. So they said that I had AIDS, and I didn't have many friends after that. I was really sad! 

Because there were only a few months of school left, I finally just gave up and stayed home for the rest of the year. I became a loner, watching Oprah every day and eating packs of gum and bags of pop corn with my mom. Then I started to gain weight. Everyday it was like putting on 12 pounds. I tried really hard to diet and to do physical activity but nothing seemed to work. Now kids didn't call me AIDS girl. They called me FAT girl. It made me feel horrible about myself. I was so embarrassed it was hard to even go out of my house. 

I was so sad
Come with me to see what happened next!

Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: November 14, 2004