Debbi to Ryan White on January 21, 1989

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Dear Ryan,

I don't know how to start this letter to you. I'll start at the beginning. My name is [ ] and I'm 15 years old. I live in [ ] Arizona. The reason Im writing this letter is to tell you that I saw the TV movie about you on Monday night (1/16). Im sure your saying so, so did half of America! Well I want you to know Im so sorry about everything thats happened to you and your family. Im sure you have already received letters about your TV movie. But Im hoping you pay special attention to this letter. The reason I ask you to do so is simple. I feel that we have a lot of things in common, but more importantly, our diseases. I don't have AIDS or hemophilia, I have Lupus Erythematosus. (Long name huh?) Lupus is an auto immune disease. Thats where your immune system attacks your body instead of helping it. The best way, I can think of, to explain it is when your brain

Last edit about 2 years ago by Hayley McCoy
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tells your white blood cells to go "help" on of your vital organs out. But with Lupus your vital organs have nothing wrong with them, signals just get crossed, and your body attacks itself. There are three types of lupus. 1) Systemic Lupus, thats what I have and is the most serious. 2) Sun Sensitive Lupus, the least serious. 3) Discoid Lupus, which affects the skin. I was diagnosed in 1983 but had it 1 year before the doctors and nurses caught it. I was in the hospital 4 times, in 5 weeks, (all emergency visits). The first indication that I had Lupus was when my mother found blood in my urine. (Pretty sick, huh!) I was constantly complaining of aches & pains, I was irritable, I had a low grade fever, and flu symptoms for over a month. When my mom took me to the doctors they kept telling me I had the stomach flu and to come back in a month. Well when

Last edit about 2 years ago by Hayley McCoy
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we went back they said they thought I had a kidney infection so they sent me to a Urologist, a kidney specialist. Well he said it would probably go away in a while, not to worry about it. Well then I went on a camping trip with a friend and came back with rash on my face in the shape of a butterly. Well my mother had had it up to here with these doctors and thier favorite statement, "Don't worry about it." So we went back to the doctors and they finally admitted I had some thing wrong with me. They set up an appoint ment with Dr. [ ] a specialist with Lupus patients. I still remember the day she told a frightened 9-yr old she had Lupus, and was to go immediately to the hospital. I felt like a bomb had been dropped on me. Right away I said to myself Im going to die. I asked myself how

Last edit about 2 years ago by Hayley McCoy
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this could of happened to a girl who was the fastest runner in her class, who was so involved in sports, how could a healthy 9-yr-old come down with a disease that took all of that away from her. No one knows. No one knows how lupus is transmitted or how to cure it. My life was living hell, with everything wrong with me. I had high blood pressure, Diabetes, (for a while) black-outs, memory loss, throwing-up, chest pains, migrane headaches, and I was on every special diet known to man. My lupus finally went into remission, after a while. During that time my whole appearance had changed. My own brother didn't recognize me. I missed 2 months of school and through the whole ordeal the only thing that mattered to me was going back to school. Sound familiar? When I finally had enough energy to go back to school, I did, and the first year back was awful. I had gone from

Last edit about 2 years ago by Hayley McCoy
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a [ ] skinny athlete to a, [ ] green eyed, chubby girl, who barely had enough energy to walk. The change was so drastic that kids I had gone to school with since pre-school, thought I was the "new kid on the block". No one recognized me but the kids that had visited me in the hospital occasionally. It hurt to see that coming from my oldest friends. Lots of kids made fun of me because of the way I looked. Im not telling you this to get your sympathy, just the opposite. I feel so awkward writing this letter. You don't even know me. But, Ryan, I want to be your friend. Maybe I'll never meet you but maybe I can through letters. Please don't think Im trying to be forward. Years ago when I first heard about your story I felt automatically compelled to write to you. I have no excuse for not doing so. But on Sunday (1/15) I read the story you wrote in USA

Last edit about 2 years ago by Hayley McCoy
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