Hot Springs Village, AR
Stargardt's Macular Dystrophy
Age at Diagnosis
20/200 in one eye and 20/400 in other eye
I have been to the Jules Stein Institute in California to be a part of a research program for fenretinide. It will be a 5 year process. The first year they did my baseline and will continue to monitor my vision. I did not know there were so many tests that could be done on eyes.
Have had genetic testing and found the genes that caused my disease. My dad said that his grandfather must have had this, because he used to sit close to the tv and watch it out of the side of his eyes instead of looking straight on.
Impact on My Life
Had to check out of college and am working toward enrolling again with the aide of the Arkansas State Department of the Blind
I met a guy before I was diagnosed with Stargardt's. I just knew he would leave me as soon as he had to deal with all of this. I guess it was true love. He's still here.
My mom found out that one of the science classes was studying disabilities and set it up for me to go and talk to them. Most of these kids had known me when I was a cheerleader at their school or through their brothers and sisters. I think this happening to someone like me that they knew really brought it closer to home for them.
At our gym, the kids accept me as if I were not blind. They tease me every once in a while. I think it has been a really good experience for them to deal with someone like me. They have learned that a disability doesn't really make you that different. I hope that knowing and being around me will make it easier for other disabled people that these kids come across over the years.
I have learned to use my peripheral vision. I have to sit close to the tv to see. I was given special glasses to wear to see the tv better when I was diagnosed and would not use them up until recently. I wish I would have used them sooner.
I really am doing well coaching at the gym. The kids can't believe what I see and correct them about, such as tumbling, motions, dancing and jumps. They cannot even believe I am visually impaired. I guess I have learned to use my peripheral vision.
And, I am still volunteering at my mother's cheerleading gym.
I have been volunteering through a college volunteer programs at our local school helping by tutoring. I want to be a counselor in high school. I think I can help kids a lot.
More About Me
I have recently finished my second semester in college. The first semester I made all A's and the second semester I made A's and B's. I guess with determination, you can do anything.
I have been blessed by many wonderful people in my life. The Arkansas Dept. of the Blind assigned a counselor to me and she has been awesome. When I heard that someone was coming out to visit with me, I expected some grumpy government worker. Not her, she was here to boost my attitude, tell me what things were available and to help be get back in college, and set my goals. She did not give me time to feel sorry for myself. They have provided me with many things I need to get by in life, such as CCTV, Zoom Text for my computer, a large monitor for my computer, glasses for watching TV, and many other things. They are also paying for my tuition to college. So, those of you that are out there with the same problem, don't hesitate to call your State Services. Also, someone who has been wonderful to me has been my counselor at the college. She makes sure that I have large print information and tests from my teachers and eBooks so that I can do my school work better.
My Mom and Dad have been the best!
I have recently bought a new car. (cannot drive it yet - but will) With a scholarship from the college and funds from the Arkansas Department for the Blind, I am going to be ordering bioptic glasses this week. And then the state is paying for special lessons. AND I AM GOING TO START BACK DRIVING SOON!! Yay!! I get a large portion of independence back.