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CG ShopUsher Syndrome |
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| Written by CG Girl |
| Friday, 09 October 2009 18:36 |
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USHER SYNDROME: My best friend’s condition By Taryn Gonzales My best friend in college was born with a condition called Usher Syndrome. Research shows that it is a hereditary condition that affects both your hearing and vision together. At age 4, her parents found out that she was hard of hearing and a year later she was fitted with hearing aids. It wasn’t until she was 15 when she realized what she had. She was at a friend’s Quincenera when the uncle of the girl having the party noticed that she was having a hard time keeping up while she was dancing. He knew exactly what she had. He happened to work with people who had Usher Syndrome. He approached her parents and told them what she had. She said her parents were very upset and it took time for them to cope with it. Up until that point they knew there was a problem with her vision but they had always thought it was just night blindness. A few weeks later her parents made a doctor’s appointment, who confirmed that she had Usher Syndrome Type II. Type II is where you are born hard of hearing and your vision degenerates with time. Since then, she has lost a lot of vision. She has no peripheral or bottom vision. She can see only what is in the middle of her line of sight. In kindergarten and 1st grade she attended a regular school environment. In 2nd grade is when she began sign language classes. She also took speech therapy from 2nd grade through her junior year of high school. Her sophomore year of high school she was a member of the drama club and she got the part to play a character in the school play of a girl who was “mute.” At the end of the show the character in the play begins to speak and she said that everyone in the audience was in awe. It was considered a big deal at the time because not very many hard- of-hearing people had been members of the drama club. Even the local news station came out to see the play and made a special news story on the event. During her high school years it was her hearing that affected her more than her vision. She was on the dance team throughout high school and in college as well, but she had to quit because her vision started to worsen. After that, she joined the campus sorority, which is where I met her for the first time. We hit it off with our love of fashion and similar personalities and she has been one of my best friends ever since. Currently, there is no surgery to correct the vision for people affected with Usher Syndrome. Research is being done, as we speak to find a cure. The doctors do not know if she will completely lose her vision. They say that it varies on the person. So she takes care of herself by eating carrots and making carrot juice that is rich with vitamin A, which is good for vision, in addition to her prescribed medication every day. She recently went to the doctor and they told her that her left eye has lost a lot of vision, but her right eye appears to remain stable. She has been referred to a specialist in Houston. They hope to determine if the disease is hereditary. Her older brother is also affected with the same condition, but her younger brother does not have the condition at all. I’ve never known anyone as sweet as her. I’ve never known anyone with so much love and passion for life. She always wears a big smile and her smile lights up every room when she enters. She is not only a great friend but also a great person. She never lets her condition affect her in a negative way. When someone tells her she can’t do something she does it anyway-just to prove them wrong. And she has a message to everyone with Usher Syndrome: “Do what you love and always follow your dreams.” |
