My Story

About four years ago, I found out I was diagnosed with a hereditary macular dystrophy, which causes me to have a loss of central vision.

One day, I woke up and my vision just wasn’t the same. I had put it off for about week, telling myself something must be in my eye. No worries. Well as the week went on, it didn’t change, my vision actually got worse. I immediately called my eye doctor and set up an appointment with him. So the day I went to his office, I was pretty scared. He ran his test and saw the abnormality in my eye and immediately got me in touch with the Retina Group of Washington (RGW). I visited RGW the week after. It was a new and scary experience. RGW ran their normal test when looking for abnormalities in the eyes and discovered that I had something that looked like Stargardt’s disease. from this point on, life was different and I was going to start a new journey with the National Institute of Health (NIH) at the National Eye Institute (NEI).

I was at a loss for words when I heard this. I didn’t know what was going on with me. It was the scariest time of my life. At this time, I was 19, going on 20 and I was just really starting to experience life as a young professional and college student. What is a young adult to do with there lives when this happens.

I immediately starting doing my reasearch.“What is Stargardt’s Disease?”. As much as I wanted to learn about this new-found diagnosis, I didn’t.  I just wanted it to go away! I wanted everything to be back to normal.

Three years later, August 2013, after visiting NEI, the same scenario that happened in my right eye, happened in my left eye. At this point I had done all my research, educated myself about the genetic eye disease and was prepared. I knew this would eventually happen and it was only a matter of time.

6 thoughts on “My Story

  1. Thank you for sharing your story, Fatmatta.
    I have Retinitis Pigmentosa and have only recently started encountering other eye diseases like yours. It does sound very scary! But good for you that you are an advocate to other young professionals. I love your tagline, “Seeing Life Through Different Eyes” and I also love your swahili title Maono Ya Chini. It really stands out.
    Your website sounds like it’ll be a good positive outlet for other vision-impaired people to land in a safe place. =) I’m excited about it. It’s a pleasure to meet you through your writing. I hope that you will stop by my blog and see me as well. You can find me at http://amybovaird.com.
    Take care!
    Amy

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    1. Hey Amy!

      Thanks for taking the time to read my story. I truly appreciate it. I am hoping that change the world for all people who suffer from any disability. We are people and just finding different ways to still enjoy life. Funny thing is that I am still learning about my vision and other eye diseases every day.

      I will definitely check out your blog. Thanks again for stopping by.

      -Fatmatta

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  2. Hi Fatmatta, I don’t know how I missed your “About” but I think you had already told me you have Stargardt Disease. Did you ever contact Libby Thaw of the Checkered Eye Project (www.checkeredeye.com)? She has the same eye disease and due to some of the issues in educating people about low vision she founded the CEP as an awareness effort to bring attention to this realm of vision loss.

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    1. Hey Steph! And no worries and I have checked out her site. But have not contacted her yet. I will have to put that on my to-do list to make sure that happens. She can probably help me with the ideas I have cooking up in my head. Thanks!

      Liked by 1 person

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