Josh Steinberg
In honor of Blindness Awareness Month this October, I wanted to share my story of vision loss. Feel free to share this with others to help raise awareness about blinding retinal diseases.
I knew there was something wrong from an early age. When I started playing tee ball in the first grade, I had trouble tracking a baseball that was thrown or hit toward me. So I switched to soccer. I saw multiple ophthalmologists who were unable to determine the cause of my vision impairment. Finally, at age 16, when I was getting ready to learn how to drive, I was finally diagnosed by a retinal specialist with retinitis pigmentosa (RP), a disease that causes progressive loss of peripheral and night vision, and eventually, central vision, and was coldly informed that I should never drive a car. So I moved to New York City for college, where having a car is more of a nuisance than a benefit.
Josh Steinberg looking to the side standing in a suit before his wedding.
I hid my vision loss from my friends, classmates and colleagues for as long as I could. I steered clear of any activity that posed a significant challenge, and missed out on a lot of social opportunities. I thought I was doomed for a life alone, without a spouse or companion. Eventually, my vision loss progressed to a point where I couldn’t hide my disease from the world any longer. So I decided to slowly “out” myself in my first year of law school, using a white cane in my summer internships and jobs post-law school. I shared my diagnosis with my friends, who were of course were unsurprised, having noticed my vision challenges over the years. Slowly but surely, my confidence improved, I became a successful attorney, and eventually, met and fell and love with the most beautiful, supportive woman who would eventually become my wife.
I now have an incredibly fulfilling life. But I still push for a cure for RP and other inherited retinal diseases by supporting the Foundation Fighting Blindness, with both my time and resources. Serving on both New York chapter committees and a national Strategic Council for FFB has given me an insider’s look at the ongoing progress that is being made toward treatments and cures for blinding diseases, some of which are already FDA approved, others in ongoing clinical trails, and still countless other opportunities on the horizon.
If you are able to donate to the Foundation Fighting Blindness in my honor as part of #ShareYourVision, please visit their website to make a gift.
