Below you will find my contribution to the Bad Yogi Magazine article, Dear society: You Can Be "Blind" and Still Use a Phone. I’m 28 years old and five years ago, I had perfect eyesight. When I was diagnosed with Stargardt disease at 23, I learned that my eyesight would slowly diminish over the next 10 years. Initially, I was terrified. Previously, I’d been planning to go to dental school, which was immediately derailed. I was also terrified because I had no idea what blindne

This post is a real treat! It was such an honor to be a part of the Bronx Narratives Radio podcast highlighting Bronx culture, people, and tunes!! We had a great time! Click to Listen in! What you’ll hear: Updates from your hosts Kayla and Dondre Dope music A walk-thru of my experience with losing eyesight and all that accompanied My current thoughts on the eSight eyewear from the Rachael Show (I don’t know anything about the newer or updated glasses, I only refer to the o

Say what?! Great news!!! Acucela Receives Orphan Drug Designation from the FDA for the Treatment of Stargardt's Disease! Prior to my research, I did not know what an orphan drug designation was. Here's my current understanding: Basically, it is a tax exemption for researching a drug that treats or cures a rare disease. It creates a financial incentive. As we know, Stargardt's is a rare disease that affects (over) 25,000 Americans (Low Vision Centers of Indiana, 2016). P

With every person that I meet, I want them to leave understanding that there is always a silver lining in any situation in life! Last week I had the honor of working with Vixen J. to contribute my story to his wonderful and inspiring online series! Similar to Humans of New York, Minute Made NY is a profile series dedicated to highlighting individuals on what drives and motivates them to keep going in their daily lives, as well as their personal stories, in one minute. I lov

I have been in observation of myself and what is true about my feelings and experiences throughout this journey with Stargardt's disease. Over the past two years I have written down statements (as they genuinely come to mind) about my experiences living with Stargardt's. The goal is to help demystify low vision/blindness by sharing the "real". I hope this has value to you and I will slowly continue to write more "Truths". #! I don't see your facial expressions even when i

It’s time for an update! If you're really curious about this photo, keep reading! As you may know, the central vision loss experienced with Stargardt’s Disease is progressive. For many of us, we begin to lose our vision very slowly at first. Then we might experience a period of more rapid vision loss. Eventually, it is expected that our vision loss will plateau. My vision has changed since the last time I reported on it. But first, lets backtrack just a little. I was b

If you’re reading this blog for the first time, we who have Stargardt’s Disease are experiencing a loss of vision due to macular degeneration. I don’t usually post about clinical trials because I really value the importance of adapting and coping with our vision loss. I do realize that we can’t ignore science and the hope for a cure, but I value overall wellness in the meantime. I think it’s only right that I include some information about clinical trial on this site. Last

I always hated wearing sunglasses. I felt as if I was missing out on the beauty of the daytime by wearing shades. The ophthalmologist asked me once if I ever stared at the sun as a child. Now that I think of it, I probably did. Why wouldn’t I? I was told that having Stargardt’s and wearing sunglasses and a brimmed hat is like going running and wearing sneakers. They told me I must protect my eyes from UV rays in order to slow the progression of vision loss. That means

When you read this post remember that it applies to my own experience and that people with Stargardt’s or other visual impairments are very unique. Stargardt’s can progress at different rates in different people and what I see may be different from another ‘Star’. What we all have in common is a decrease in central vision. It’s actually hard to describe what I see without rambling. Here’s my best shot at it! It’s like looking through a donut held away from you at an arm’s