Introduction

About three 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.

Two 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.

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6 thoughts on “Introduction

  1. HI……MY STORY IS VERY SIMILIAR TO YOURS. MY DIAGNOSIS ALSO CAME THRU THREE YEARS AGO AND NIH HAS BEEN FOLLOWING MY CONDITION SINCE THAT TIME. RECENTLY I RECIEVED SOME AWESOME NEWS FOR STARGARDT’S PATIENTS. IT APPEARS THAT THE RESEARCH IS QUICKENING AND THE OUTLOOK FOR TREATMENT WITHIN THE NEXT TWO YEAR WILL BE CONFIRMED. THIS JNFIRMATION CAME FROM A CREDIABLE SOURCE.

    DEFINITLY THIS IS A VERY HOPEFUL PROSPECT TO LOOK FORWARD TO!!!!!

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    1. Hey Vivian, Its definitely nice to come across someone who has a very similar story. I always knew it could happen but it would be rare. As far as the research I have heard the same thing also. So it provides a greater hope for those live with the disease. Bu the funny thing is even after being at NIH for 3 1/2 years, my diagnosis is still unconfirmed. Now im there a little more often than I would like to be. But I hope I find out aomething soon

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  2. I like the term Maono Ya Chini sounds exotic. I too have low vision due to a diagnosis of macular holes. My vision loss started 8 years ago and 4 years ago I became legally blind due to the macular holes with no central vision, glaucoma and cataracts. One of my personal frustrations was with those who work within the field of vision loss and the jargon used on patients. The loss of vision can be difficult to handle however I think the situation could be a little easier if doctors could get to a point of knowing the resource to with which to refer patients.

    I did like you and researched to the point of becoming a subject matter expert on macular holes. I also stress to others to be their own advocates because most times we know when our bodies are telling us there is somthing wrong.

    I think as awareness of low vision grows and more and more people will become more comfortable with their vision loss by sharing with others, it will be then that we can have the most impact. Losing vision is not a death sentence and peer groups are such a blessing to those newly impacted by vision loss.

    I hope all goes well with you.

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    1. Lol thank you. That was my main reason for choosing it. I want people to know that it is a beautiful thing and it should be something we embrace, but also teach others about. Because alot of people do not know about it.

      Only we who live with it can be self advocates for others. I am happy to see that you didn’t let that stop you. I LOVE IT!!

      From creating this blog, I am seeing life a whole lot different. Keep me updated, I am open to exploring and writing about new topics. Make sure to follow me on twitter if you have one

      I hope all goes well with you also

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  3. They say great minds think alike and I’ve just started posting on my blog Bold Blind Beauty to eradicate the thinking that because we don’t see well that this equates to not wanting to look our best. Keep up the good work and I’ll do the same =D

    I am on twitter as well and will follow you there.

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    1. You are right about that lol. I read it. I love that you are doing that. Beauty never stops because of a disability. Im going to enjoy being updated and reading your blog.

      I will follow you on twitter also.

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