Thanks for visiting. My name is Jackie and I'm 17 years old (when I wrote this in 2001). I have three brothers and three dogs. And I have six of the best friends ever...they are incredible! I also have a pretty nasty disease, but more about that later. My friends and I all like the same things, and I have fun going to the mall or the movies or the beach with them. I used to join them in skiing, rollerblading and diving, too, but my medical problems make that impossible now. Fortunately, I absolutely love theatre, and despite my illness, I can still enjoy shows. Recently I've seen Annie, Les Mis, the Nutcracker, Joseph and the Amazing Technicolor Dreamcoat, and a Chorus Line. Every once in awhile, my parents take my younger brothers and I to the ballet. When I'm watching actors or dancers, I forget about what I'm no longer able to do, and appreciate just being able to attend the performances.

I have suffered from something called gastro-esophageal reflux disease (GERD) for what seems like forever, even though I didn't start treatment until I was in the fourth grade. I have a type of GERD that's both severe AND chronic, which means that  I've had lots of tests, doctors, and hospitals, and that I've had this problem for a very long time. In fact, this week I have to go to the hospital to have a periscope put down my throat so that the doctors can see how my esophagus is doing. The "periscope" is really called an endoscope, and the procedure an endoscopy. I might even find it interesting, if it were someone else who was going to have it! 

You have a stomach with a special muscle on the top that contracts to keep your food down there once you've eaten. With GERD,  the muscle on my stomach doesn't tighten up as it should, resulting in stomach acid, and food, coming back up my throat. Even though I take some pretty strong medications, I usually vomit at least once a day, all because of that pesky little muscle.  Because acid is pretty strong stuff when it leaves your stomach (where it's supposed to live),it has done a number on my throat, even causing bleeding. Once I had to be fed through a tube into my stomach. Incredibly weird, but I guess you can get used to most everything. 

One time I went for three weeks without holding anything down. Not only  had I lost a lot of weight--I lost strength too. I was admitted into a hospital, and my regular doctors weren't available. Some doctor who didn't know me decided that it was absolutely impossible for me to have GERD...because I was 16. Seems like GERD is primarily a condition of infants that is  outgrown by the time the children are school-aged. Because my symptoms didn't "fit the textbook", I was diagnosed with an eating disorder, instead, despite my mother's attempts to tell everyone that I have chronic GERD. 

Because of real concerns over the amount of weight I'd lost, and because "they knew best", I was sent to a psychiatric hospital to "get treatment for the eating disorder". After three weeks of therapy, during which time, coincidentally, the GERD got under control, I was discharged. I went to  my regular GI doc and pediatrician and they both whole-heartedly undiagnosed the "eating disorder"!

Though I can't say that this disease has been particularly pleasant, I remind myself that there are other people out there worse off than I am, and I tell myself that I ought to be happy that I'm alive. I try to remember to laugh about something everyday, too, because I've noticed that when I do, I have a different attitude about being sick.

The worst thing about being me is having an illness that makes me tired and weak. The odd thing is that at the same time, the best thing about being me is my illness. You see, it is because of it that I've been able to appreciate more, become a better friend, and become more dedicated to finding a cure so that others don't have to suffer.

School is often hard for me because of all the meds I have to take, because of my weight fluctuations (I can lose 5 pounds in just 2 days when I'm having a sick spell with a lot of vomiting), and because of all the class time I miss. Though I usually don't get teased too much when I miss school, it's tough, and even tougher when kids make comments like, "I haven't seen you in so long, do I know you?" 

I love my computer, and I must say that this is one thing I am really good at! When I was in the hospital I was able to communicate to people via e-mail and when I am home with GERD problems, I can zoom off in cyberspace and  talk to people around the world. Not only do I love working on computers, I get paid for it too--doesn't get much better than that!

I am going to a college next year far from home, and  a special team of doctors has been set up for me who are skilled in the management of GERD. I plan to major in chemistry and pre-med, and will hopefully (cross your fingers) become a medical researcher. I don't want any kids to go through what I deal with everyday. My doctors tell me that my problems will never go away, and that I am at risk for developing even more difficulties from them. I'll give you a for instance so that you'll have a sense of what they're talking about. I've recently been diagnosed with pernicious anemia (not enough strong red blood cells) because my stomach can no longer absorb nutrients. 

Visited my doctor recently, and when I asked, "so when do you think this will be all gone?", she looked at me and with the straightest face said, "I'm sorry to tell you I don't think you've gone through the worst yet. That's going to come in the next few months to a year."  Whoa.. I was so upset!  I was like, "What are you saying!"  I guess I've concluded that I'm not a good patient.  Can you believe the worst has yet to come??  Grr, what a thing to tell a kid! They may think that this disease will continue to invade my body, but I plan, someday, to find a cure. Wish me luck!

Hope you enjoyed my story. I recently started a discussion group for kids with medical problems. If you'd like to join, send an e-mail message (totally blank) to this address, and you'll soon be chatting with the rest of us!  Jackie

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

Last updated: November 16, 2004