Vision Beyond Limits

       My name is Katelyn Guinn. I’m 22 years old and born and raised in Fairhope, AL. I’m honored to share a story that’s deeply shaped my life. It begins with my sister, who was diagnosed with Stargardt disease a year before I was. While it’s rare for two siblings to share this condition, we like to think we’re overachievers. We also believe God knew we’d need each other to empathize with. Stargardt disease is a genetic, progressive and incurable eye condition that I often refer to as a form of juvenile macular degeneration. I was diagnosed at 18, in 2020 – the year of the pandemic and my high school graduation. The first two situations are stressful enough for any teenager, but this diagnosis felt like being handed a life sentence with no chance of remission.        My vision started at 20/40 and rapidly declined to 20/200 and 20/300 in my weaker eye, all in less than five years. At first, the changes were subtle – struggling to read without magnification and not being able to see traffic signs or lights until I was too close. But when I could no longer recognize faces, or even see my own reflection in the mirror, it hit me. These times were hard, and for the first two years, I stayed in denial. There were the moments in my life I knew I could not change what was happening, but I could accept and start adapting to my new reality. So eventually, I chose to respond proactively. I reached out for resources and support, like CSVR, who helped me with many tools to make living independently possible; from magnifying glasses, kitchen aids, banking tools, and writing utensils all designed for those with visual impairments. When I got to the point I could no longer legally drive, CSVR helped me get bioptic glasses that allow me to drive safely again and for years to come!

      I found amazing support in people like Dr. Glaus who has been the most knowledgeable and compassionate doctor I’ve worked with. My driving instructor, Stephen, who made a new change in my life easy, and Sharon, who taught me Braille and about aids available to me. I couldn’t have come this far without them.

     I also wouldn’t be where or who I am without the unwavering support of my husband, family, and friends who helped me rise through some of the lowest moments. I am now legally blind, and considered disabled, but I focus of the “able” in that word. I’ve traveled, tried new things, married the love of my life, and learned to find joy in life’s simple pleasures. My disease taught me patience, courage, and empathy, and it’s given me a unique perspective on the world. I may not see faces, but I always see people, and I treat them as I would a neighbor. Because for me, when I was in public, I could very well pass a friend or family member and not even realize. I share my story not just to give you a glimpse into my life, but to offer a new perspective of your own. Living with an invisible disease like Stargardt has shown me that we never truly know what someone else is going through behind closed doors. So always choose love, kindness, and a helping hand when you can.