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I was born with moderate hemophilia which is a genetic blood clotting disorder. Even the slightest injury can cause debilitating internal bleeds leading to days of bed rest and urgent trips to the hospital. Unfamiliar with the condition, my well-intentioned parents advised me to keep it a secret and put a blanket ban on most physical activities. As I grew older, I told myself that I would stop benching my life away and have better control over my disorder. I have found the physical, emotional, and mental relearning of my disease an uphill battle.
Physically, the pain my bleeds cause is so excruciatingly painful and intolerable at times that I have had to miss several days of school. Consequently, my suffering has been shared with my grades. When I stepped out my comfort zone trying out for baseball my freshman year, I ended up coming home with a black eye- adding to the list of things I’ve had to quit in fear of being hurt. My emotional and mental distress of being “Bubble Boy” grew.
These issues encouraged me to learn as much information about hemophilia especially since I knew my parents weren’t as informed due to the language barrier. I began attending seminars hosted by the SoCal Hemophilia Foundation and sharing my questions and concerns with my hematologist. To mitigate the effects hemophilia was having in my academic life, I learned to self-infuse. Self-infusing has helped save countless hospital visits by allowing me to use my medicine as soon as I feel a bleed, and has let me use my treatment as a prophylaxis for periods that I know I will be overly active. This opened the door to take part in an aggressive sport like water polo, and cut down my absences at school.With my better understanding, I have also become more open about my disorder which has let me create a network of help. I am able to get homework and notes from classmates, and teachers appreciate my proactiveness in negating the effects of my absences. I plan on continuing to be as proactive in college.
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