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    Posted February 14, 2014 by
    alexb513
    Location
    north branford, Connecticut
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    helping others overcome odds

     
    My name is Alex and I live my life with a disease called Friedreich’s ataxia (FA). Most people haven’t heard of this disease because it’s so rare, but it’s a progressive neurological disease, which requires me to use a wheelchair full-time. Research is being done to find a cure for this disease, but in the meantime, people who have it have a variety of symptoms including slurred speech, inability to walk and loss of fine motor skills. Living with this disease has not only affected me but affects my whole family on a daily basis.

    I was never truly diagnosed with my disorder. My older sister Sam was diagnosed at eight years old, when I was just four. Because FA is a recessive genetic disease, everyone just kept watching me, waiting for the first sign of symptoms. Of course at the time, I had no idea, nor did I understand what either my sister or mother were going through.

    I always loved to dance. I began dancing when I was three years old and just couldn’t get enough of it, whether it was tap, jazz, ballet, or musical theater. One of the most difficult events I remember was when I began to lose my balance a lot in class. After a few more years of stumbling and falling I began to realize that I had a problem, and it was a big one. I was still mourning the loss of my capability to dance when something even more challenging happened: I realized I could no longer even walk. At this point, I got my first wheelchair. I was eleven at an age when most of my friends were just taking off and becoming independent. It was a time for dances, get-togethers, and lots of fun. But not for me. No matter how much I tried, little by little, I was cast aside until I had almost no friends. The more different I looked from the “typical” teenager, the harder it was to fit in. It became a lonely existence. I had to deal with the fact that my childhood was so different from my peers, and that my youth had been stripped from me.

    Throughout high school, I had very few friends and began to form relationships with a lot of my teachers. I wasn’t really involved in many activities because I couldn’t participate in those that involved physical exercise that were “normal” for kids my age. Fortunately, it wasn’t all bad: I had a couple of friends who had stayed close to me since elementary school. One of those friends in particular has maintained a very strong friendship with me all throughout college. Even up until now, we have been so close that I consider him to be like a brother.

    Due to my inability to participate in a lot of extracurricular activities in high school, I tried really hard to focus all my energy on my schoolwork. Even though I held myself to high academic standards, it was difficult finding a college that was accessible and had all of the accommodations to serve a person with a disability like mine. One college in particular told me that they had a very small population of students with disabilities, and due to the old structure of the campus, it was very inaccessible.

    I ended up going to Southern Connecticut State University, which was where my sister had attended, and while I was hesitant to follow in my sister’s footsteps, the school was very welcoming. I found a lot of success there. I graduated last spring with cum laude honors and a Bachelor’s degree in social work. I have decided to pursue my master’s degree in social work, as I am finding that there are not a lot of job opportunities available for individuals with just a Bachelor’s degree. Applying for graduate school in social work was very nerve- wracking because it is such a competitive program. What gives me confidence is that the hard work I put in during my undergraduate program has allowed me good enough grades to have the potential to have half of my credits waived in graduate school. I am excited to start a new chapter in my life and am anxiously waiting to hear of my acceptance.

    While Freidreich’s ataxia has brought me many difficult challenges, it has also been the biggest catalyst for optimism in my life. It has taught me the important lesson that “everything happens for a reason,” and I genuinely believe that this mantra is true. I believe I was put on this earth with a progressive neurological disorder in order to support other people through the disease process and to ultimately find a cure. With recent advances in the medical field, championed by an organization called The Friedreich’s Ataxia Research Alliance, I feel that a cure is right around the corner, and my prayers will then be answered. These innovations continue to give me hope that I can use my own experience to help others who have to face a difficult diagnosis and need to know that they still matter and that they still have a lot to give.

    friedreich's ataxia, rare disease, helping others, The Friedreich's Ataxia Research Alliance
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