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Hello!  My name is Gerald, but my friends call me J.J. I'm wrote this when I was a nine-year-old boy...Now I'm 13, and I may just write some more when I get around to it. OK, here goes. I have lots of energy. My mom says that I'm funny and fun to be around. She thinks that I have a big heart and tells me that I'm really sensitive. My favorite sports are baseball and swimming, but I also like dirt bikes, video games, baseball cards and computers. Lions and tigers are my favorite animals, but neither is great for riding, so I'd like to have a horse to ride when I'm older. Pizza is my very favorite food. I guess that's about it for my favorites right now.

I have a 'hidden' medical problem that I'd like to tell you about. Most of the time nobody can see it, but sometimes I get very big bruises because of it, and often when that happens, I can't walk right or move properly. Did you figure out that those symptoms are caused from some bleeding inside my body? They are. The bleeding fills up an area under my skin, and all the pressure that builds up makes me look and feel different.

This bleeding disorder is called hemophilia, and it means that I'm missing something in my blood called Factor VIII (8). When you bleed, it's the factor VIII that helps your blood to clot. When I bleed, I don't have enough of the factor, so sometimes it seems that the bleeding just can't quit. Lucky for me that my mom keeps some special medicine in the refrigerator. It's made of this factor VIII. It comes in two vials--one liquid and one powder--and when I need it, she mixes the two together and puts them in a syringe. Then she starts an IV, usually in my hand, because I don't like it in my arm. In about 5 minutes the medicine starts to work. Sometimes I have to stay still for a day or so because I hurt too bad when I  move. That's when I get to watch movies I haven't seen yet. 

Hemophilia is a bleeding disorder that I was born with but that you can't catch from me. It's a problem that will stay with me forever. That is,  unless they find a cure, and I am sure that they will someday! I don't have as many "bleeds" as most kids with hemophilia, because I do have a little of what I need to stop the bleeding...just not enough. My bleeds are usually caused by bumps and bruises. The small ones I can handle, but those big ones...and those nasty twists to my ankle or knee, they really get me! The interesting thing is that I don't bleed any faster than you do; my body just has a tough time knowing when to stop and clot.

Here I am with my silly brothers!
I know that this is hard to believe, but I have been in and out of hospitals and emergency rooms about 120 times. Too many to keep count anymore. That's because for a long time, my mom couldn't give me my special clotting medicine. Now that she learned how, we can do it at home so we don't have to go to the hospital nearly as often...just when the bleed is too big for my mom to handle. This is especially good since whenever I was absent, I would feel sort of left out and out of place when I returned to school, even though my classmates never teased me about my bruises. 

I have a favorite nurse who really helps my mom and me when we go to the emergency room. Her name is Rita, and she has long red hair. She always seems to be there when we need her. She taught me how to relax, and I'll tell  you, being calm helps the needles to go in a lot easier. When I was younger, I used to give everyone a really hard time because I was scared, afraid that the IV would hurt. My mom always stayed calm, though, and she would tell me "It's gonna be all right". Now That I am older, I am much braver when I need to get the medicine. It seems a lot easier to me now.

A lot more understandable, too, thanks to my doctor and all the other nurses and my mom.They all taught me that I am as normal as anybody else, even though I can't play certain sports or hold certain careers. What I can do is so much more. I figure that if I keep positive and just go for it, I'll be much happier. 

One time when I was in the hospital I got the nickname Houdini. I was in traction following one of the episodes of bleeding; at least I was supposed to be. But when everyone would sleep, I would manage to get out of the ropes that controlled the traction. It might have seemed like I was a magician, but even I didn't know how I was doing it. Of course the nurses then  kept a closer eye on me and they would always put me back in so that my bones would heal properly.

J.J. (alias Houdini)
I have lots of friends in school. My best friends are Tony, Daniel, David, Charlie, and Josh. We all like to play tag. I don't talk to them about the hemophilia since I just know what I can and can't do to keep from getting hurt.  My teachers and the nurse at school know about it, though, because my nurse Caroline from the hospital came to school and explained what they needed to do whenever I have a problem. 

First thing they do is put ice on whatever gets injured. Then they call my mom for further instructions. If I have to have my medicine, my mom comes as fast as she can. It's all worked out fine so far. Except one time a boy chased me with a pair of scissors because he wanted to see me bleed. I made it safely to the teacher, and he got in big trouble for that one. The other kids who know about my disorder are very nice and try to be careful with me. I have been incredibly lucky so far. When they play something that I can't do, they often change what they're doing so that I won't be left out. Isn't that great?

Since I have so many problems when I get injured, I've learned a lot about staying safe. For instance, it is so important to wear your helmet, knee and elbow pads when you're riding a bike or skating on roller blades. I wear my pads all the time because I know that they  can save my life.

Notice how soft the sand looks!
Thank you for taking the time to read my story. 
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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: November 14, 2004