Maono ya chini

Fatmatta wurie

Visually Impaired Blogger

Her Story

About nine years ago, I found out I was diagnosed with a hereditary macular dystrophy, which causes 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 standard 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 research."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.

Standing against a yellow concrete wall wearing a rose color dress and rose color shirt with bell sleeves

Standing against a yellow concrete wall wearing a rose color dress and rose color shirt with bell sleeves