Personal Narrative: Tuberous Sclerosis

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I have a disorder that only a million people in the world have. Out of those one-million people, fifty-thousand are living in the United States. Put yourself in the shoes of a parent for one second and image being told that your son may never know who his own parents are, as well as the rest of his family. That he may be developmentally delayed for the rest of his life. This disability, Tuberous Sclerosis, has not only affected my past , but also it will shape my future. When I was a just a few months old my parents noticed something very odd about me. They noticed that when I would be playing with my toys, I would squat down, drop my toys, and freeze with drool dripping down and out of my mouth. At first my actions did not seem out of the ordinary. But more and more these “episodes” would recur and my mom and dad grew more and more worrisome for my health. Then finally when I was 11 months old, they took me the doctor and he, after running me through a number of tests, decided to send us to a specialist. After going to the specialist, he concluded that my “episodes” …show more content…

Everyone that knows me or has seen me knows that my most distinct part of my body would have to be my face. What I have on my face, I call them my freckles. What it they are actually called are facial angiofibromas. Then the two brown spots at the top of my forehead are called shagreen patches. Then the last of the skin lesions I have I call my white spots. They are not on my face but I have them everywhere else on my body, ranging in their size and shape. These white spots are called hypomelanotic macules.
Fortunately, my brain has developed now around my tubers and should not have issues with them anymore. The tubers in the back of my eyes show no sign of ever getting bigger than what they are right now. My kidneys also are healthy and show no signs of being any trouble, but I will continue to get checked on every year for the rest of my

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