My DNA Diagnosis

by Heather C., Michigan

I remember the day like it was yesterday, July 31, 1997. I sat in that cold room with my parents waiting for the team of doctors to return with the DNA results that would change my life forever. Sitting in that little room I could see the look on my parents’ faces was pure terror and disbelief, but the whole time they knew what they were to be told. I felt all alone sitting in that blue chair fidgeting and waiting, just starting at the cold white walls, they weren’t even colorful. I thought how could they do this? Put me in a room with no color or happy thoughts where I knew they were giving me what I thought then would be my death sentence.

Eventually a team of doctors returned to the room including interns to “talk”. I was terrified when Dr. Fink, our genetic specialist sat down next to me and asked my if I knew what Von Hippel-Lindau syndrome was. I didn’t know what to say at first so I simply ignored him. My mom and dad plainly questioned, “She has it too doesn’t she?” He just nodded and looked at me. I turned to my parents and him and sobbed, “I hate you! I don’t have it!

You’re lying! How can you do this to me?” I had never been so embarrassed in my entire ten and a half years of life. He attempted to explain to me that I would have a perfectly normal life and that with regular monitoring I could live a healthy life. I didn’t believe it though; he had just given me a death sentence.

My parents tried all day to reassure me that I could still be their healthy little girl, but I wasn’t buying into it. Later that evening when we returned home to give everyone the news I was “different” I told my best friend. She just stood there and said, “Oh, well I can’t play right now. I need to talk to my mom.” I had never felt so rejected in my life. I just couldn’t deal with finding out that I was different and losing my best friend all in one day. I went to my room and sat alone covered up in my pink flowered quilt and bawled like a baby.

When school approached I begged my parents to not make me go; go to a place where I would “different”, but I forced to face reality and go. Once it actually started and I gained some sort of confidence I told my new best friend that I was different, I had a rare genetic disease. Word quickly spread around the sixth grade that I was contagious. I came home completely hurt and confused. Was I contagious? Was it like AIDS or a common cold? And could I give it to people? My mom and dad sat me down and helped explain things to me, but I still couldn’t grasp the fact that what I had wasn’t contagious.

As the school year ended and another began I just kept quiet about my disease; it was mind and no one needed to know about it. I had random days during the school year where I would be absent for testing and friends would ask, but I never gave any information. I had discovered in the sixth grade that it was too risky to share that information with people; I had had a hell of a time keeping friends then; why would I want to risk it all over again? I really didn’t think too much about it anymore until a few years later when high school started and boys became hot instead of icky and having cooties, but then all of the horrible memories of junior high spread through my mind like a wild fire.

I can vividly recall the time when I told my first “serious” boyfriend of two whole months about it. He just said, “Okay, well whatever.” That relationship didn’t last partly because I don’t think he could handle the fact that his girlfriend had a weird disease that for one wasn’t curable and two that he didn’t know anything about and was too terrified to ask. When I entered my current relationship a few months after that break up I was completely nervous to even mention that I had a rare disease, but I did anyway. Even two and a half years later he has been there guiding me through it and asking questions of his own. Having a rare genetic disorder has been stressful and in some ways beneficial to myself. I’ve had to deal with things that some kids only hear about on the 9 o’clock news and I’ve had a wonderful chain of support throughout it all.

The day I found out I had Von Hippel-Lindau syndrome was an enormous leap for me. I had to grow up and realize that I was different from everyone else but the difference that I discovered was that I had a genetic disorder that wasn’t going to run my life. I am responsible for what happens to me by taking care of me including going to long and sometimes painful doctor appointments. I can live a healthy and normal life just like everyone else. A disease doesn’t have to be the end of things or a death sentence, in some way it is only the beginning of a new outlook on life.

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