My Journey This work has been published in the Teen Ink monthly print magazine.

     Before the doctor even said a word, I knew.

On a Friday in the spring of 1998, he walked into the exam room with that “this-is-not-good, so-prepare-for-the-worst” look.

We’ve gone over the results again, and you’ve contracted it,” he said. My mind went blank. I swear even the ticking of the yellow clock on the wall ceased for what seemed a lifetime. I couldn’t breathe, couldn’t think, couldn’t register anything else that he said. I couldn’t even pronounce this thing that I had, but I knew that moment was the beginning of a long, painful journey.

I was diagnosed with Juvenile Dermatomyositis (JDM), a disease where the immune system attacks the skin and muscle cells. If untreated, it can shut down more important muscle systems, including the heart and lungs. It is a little-known disease and affects only about three children per million. I was diagnosed only six months after first showing symptoms so I was still able to walk and my major muscles were still functioning when I began treatment.

Immediately after my diagnosis, I was put on three powerful medications (prednisone, methotrexate and quinacrine). While they helped control the disease, the side effects were not pleasant - I gained a lot of weight, got a reddish-purple rash on my face, and was always tired. I was on these drugs, and others, for the next five years. I would slowly be weaned from them, but then have to go back on, over and over.

That Friday I became a science experiment. Every week, I’d go for a check-up and every week, a new batch of medical students would be there to study my rash, take pictures, test my strength, and ask questions about every aspect of my life. I got so sick of being studied, analyzed, questioned, poked and prodded that I just wanted it all to stop. Instead, things went downhill. Two years after I was diagnosed, the JDM got worse and I was hospitalized and pumped full of every drug they could think of (or so it seemed). After a week I was sent home to rebuild my life again.

My life was shattered with my diagnosis, and any hope of a normal childhood was dashed. I was forced to grow up in the span of months, not years. I didn’t get to run around, ride my bike, or learn to rollerblade - my muscles were too weak. I couldn’t go many places for fear that my weakened immune system couldn’t fight off infection.

I lost most of my friends; for five years, there were only three people who consistently talked to me in school. Emotionally, I had more complex feelings than any eight-year-old should have to deal with: constant terror of a relapse, anxiety about taking the right meds at the right time, and near-depression at being shunned by those who months earlier had called me their “best friend.” My life felt like hell on earth for five years.

That Friday, March 6, 1998, I became a new person. Having had to deal with those issues, those worries, I found a strength within myself to carry on. I faced each day with determination that no matter how hard it was, I would make it through. I lived that way for five years, not looking toward any kind of future. Now, eight years later, I can remember and say that I made it through, I am in remission. Now, those five years are part of my past, and I don’t think I’d want to change any of it. That Friday, March 6, 1998, will forever be the most important day in my life.

This work has been published in the Teen Ink monthly print magazine. This piece has been published in Teen Ink’s monthly print magazine.

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Lily">This teenager is a 'regular' and has contributed a lot of work, comments and/or forum posts, and has received many votes and high ratings over a long period of time. said...
Jan. 10 at 7:38 am
i love this so much!
Bonnette2008 said...
Oct. 28, 2010 at 12:56 am
I just wanted to say, that I also have JDMS. I was diagnosed in 1997 when I was 7. I am now 20, and still suffering from the disease, and its side affects. I know the pain you feel, and I am praying that you get better, and one day have a somewhat normal life. Feel free to email me at any time.
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