Fatmatta wurie

Visually Impaired Blogger and Advocate

 

In 2009, I found out I was diagnosed with a hereditary macular dystrophy, called Stargardt Disease, which causes a loss of central vision.

My Story Begins


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. So the next day I went to the eye doctor and I was pretty scared. The doctor ran some tests and saw that there was an abnormality in my eye. The doctor immediately got in touch with the Retina Group of Washington (RGW) and I visited the week after.

It was a new and scary experience. RGW ran their standard test when looking for the abnormalities that my eye doctor noticed in the eyes and discovered that I based off of the test and image results, I had a retinal disease that looked similar to Stargardt Disease. From this point on, my life became very different. I was starting 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 received this new. I didn't know what was going on with me. At this time, I was 19, going on 20 and really starting to experience life as a young professional and college student.

What is a young adult to do with their life when this happens?

I immediately starting doing my research.

"What is Stargardt Disease?, How does a person get diagnosed with Stargardt Disease?, What are the symptoms?, How does it affect everyday life? Will I have to stop driving with Stargardt?, Does relationships change with family members when losing your vision?”

I could go on and on and on searching Google trying to find answers to my questions. As much as I wanted to learn about this new found diagnosis, I really didn't.  I just wanted it to go away!!!!!! I wanted everything to be back to normal.

Four years later, August 2013, the same thing 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. This was the year I decided to take a stance on vision loss and becoming an advocate.

Once I made this decision, Maono Ya Chini was born!

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