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Family Story: Troy, 18

Throughout much of his life, Troy has endured seizures and developmental difficulties, which are common in people with tuberous sclerosis complex (TSC). These problems have caused him to struggle throughout his education, especially with reading comprehension and writing. However, despite these hurdles, Troy has never lost his spirit, and with the help of the special education program at his high school, he expects to graduate in the spring of 2006. Troy has no intention of stopping there. Following graduation, he plans to study the culinary arts. Watch Troy's video [duration 5:15] or read the transcript.

Troy quote by Troy

When Troy was two years old he came down with chicken pox and was taken to the emergency room by his mother. During his examination doctors discovered that Troy was experiencing seizures. They suspected that these seizures had begun before his visit to the hospital and likely prior to his illness with chicken pox. Often seizures remain subtle enough to go unrecognized for long periods of time. Then illnesses, such as chicken pox, can lower a child's resistance and trigger greater seizure activity or cause the seizures to become more pronounced. Troy's mom recalled that she had noticed times in the past when Troy seemed to stare off and disengage. Troy's doctors think that these instances may have actually been seizures. Troy's mom says, "That was scary, because he was having seizures, but I didn't know."

Brain Involvement and Other Symptoms

Troy at tenclick to enlarge photograph

Troy at ten years old

Upon recognizing Troy's seizures, doctors examined him thoroughly and found that he had hypomelanotic macules on his skin. A magnetic resonance imaging (MRI) scan of his brain showed multiple cortical tubers. These findings were sufficient to diagnose Troy with TSC, and doctors put him on an antiepileptic medication to control his seizures.

When Troy was six years old he had surgery to remove a large subependymal nodule (SEN), called a subependymal giant cell astrocytoma (SEGA), that was blocking the flow of cerebrospinal fluid in his brain and causing increased pressure inside his cranium. Since that time, he has been examined with MRI scans about every 12 months so that doctors can monitor his brain for growths. Troy has had no complications from SENs or SEGAs since that surgery and is now nearing an age when doctors think that SENs lose their ability to grow. As a result, he may soon be able to reduce the frequency of these screenings. (For more information, see Brain: Anatomy.)

As a child, Troy continued to experience seizures, some more serious than others, and doctors have periodically adjusted his medication to better control them. Recently, Troy's seizures have been fairly well controlled, though he occasionally has staring seizures, which can make it difficult to focus, especially at school.

Learning Problems

Troy with his teacherclick to enlarge photograph

Troy gets some help from his teacher, Jake Dylengoski.

Throughout Troy's school years he has had to endure learning difficulties. Doctors think these are likely a result of the cortical tubers in his brain and/or his recurrent seizures. He has difficulty with organization and problem solving as well as with written and verbal comprehension skills. Despite these problems, Troy has reached his senior year in high school and hopes to graduate from his school's vocational/technical special education program in the spring of 2006. In addition to his regular classes, Troy takes part in a job-training program in which he helps the cooks in the cafeteria. This program was developed to help students like Troy transition to the workplace with life and professional skills. (For more information, see Brain: Learning.) Troy's kitchen experience has helped make his dream of becoming a chef seem more like a reality.

Troy's parents have also helped nurture his hopes of attending culinary arts school and have helped him develop his cooking abilities. Troy's father is a chef and has taught Troy valuable skills, such as sautéing. Troy's mom has helped him learn to cook soul food, and Troy dreams of one day opening a soul food restaurant of his own.

Entering Adulthood

Troy with his momclick to enlarge photograph

Troy and his mom prepare a meal.

Troy is on the verge of entering the adult world, where he will become responsible for his own healthcare. This important responsibility will involve taking medications as prescribed, monitoring his TSC symptoms, and arranging visits to medical providers. He is aware of the lifelong challenges ahead of him and thinks he is ready to take them on. He has also become aware of the possibility of passing TSC to any children he might have.

Learning issues will continue to be a challenge for Troy, but with the help of his teachers and family, he has been able to set realistic goals for himself. This, combined with his ambition and social ease, will help Troy as he takes his next important steps toward living and working independently.