Ehlers-Danlos Syndrome Analysis

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Every week I would drive one hundred miles round trip to Cincinnati Children’s Hospital. I would consult with numerous specialized doctors that I had waited months to secure an appointment with. Doctor appointments became my new normal. I was informed that I had a rare genetic disorder called Ehlers-Danlos Syndrome. This diagnosis would leave me to test my resilience and it would also make me grow up quickly to manage the new responsibilities of balancing health and school. Ehlers-Danlos Syndrome is known as an invisible illness. It is invisible because a person can physically appear fine, but they suffer chronic pain and frequent dislocations due to a defect in collagen production. Without knee braces and other assistive devices, I look normal. Quickly after my diagnosis, I was confined to a wheelchair for a period. I was ashamed of my illness and despised the stares I got at school. The stares soon turned into bullying. Middle school can be a grueling time for preteens and being bullied for something I have no control of only made it harder. I did not think that there was anything that could help until I took the initiative to educate …show more content…

I was hospitalized for over a week and missed a significant amount of school. Due to procedures and multiple appointments, I had missed around seventy days in one year. Even though I had a 504 Plan that excused my absences, I was still stressed. Getting an education has always been extremely important to me and being behind upset me. I had an abundance of work that needed to be done and I pushed through. There were many times that I convinced myself that I was going to fail, but I was determined to finish. At the end of the year, received straight A 's, another standard that I wanted to hold myself to at the time. Since then, I have worked hard to maintain my grades despite my health. I eventually found the balance between my health issues and