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This
is Alan's Story
My name is Alan and I was diagnosed with Nephrotic Syndrome when I was three years old. I’m now 28 years old and doing well.
It took the doctors a long time to figure out what was wrong with me. My parents were very scared. What my parents feared the most was the unknown!
I can’t remember much about when I was sick, but one thing I do is bubbles. Unfortunately, I am not talking about the fun kind of bubbles you make outside with soap. I remember not wanting to tell my Mom and Dad when there were bubbles because it meant more tests, doctor visits, and Prednisone. I had bad dreams about all these things. Some times people wouldn’t know who I was, because I would look so different. One year my teacher didn’t even recognize me because I was so much skinnier than the year before!
I was always very crabby when taking Prednisone, especially when tapering off of it. Everything would make me angry. One day I threw a fit because my dad cut my hotdog the wrong way! I always wanted to eat all the bad foods that I wasn’t supposed to. Doritos were my favorite, but Mom wouldn’t let me have them. I also remember having to eat things that I didn’t want to, like “salt free” butter. Yuck!
The last time my kidneys acted up was when I was in about 4th grade, after getting stung by a bee. Ever since then I’ve been all better.
Alan
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