I am the third generation of an Ashkenazi Jewish family from New York City. I was born profoundly deaf, even though my family had no history of deafness. I have a deaf sister, Jaime Recht, who is 3½ years my senior.
Fashion runs in my family, and it is one of my passions that I wanted to follow in my father’s footsteps – working in the fashion industry. I held several different jobs after graduation from college. After a while, I found the work difficult for me because of my vision issue, and I decided to change my career in order to work in a more comfortable and safe setting. After a search, I was offered a position in grants management.
My parents first became suspicious about my vision problem at the age of 5, when a summer babysitter took me and my sister to a movie theater in the Hamptons. We couldn’t see well in a dark setting when we walked together into the theater. This caught the babysitter’s attention, and she notified my parents of what happened. My parents brought us to see a number of doctors in both New York City and Boston for extensive testing of our eyes. I believe it was in 1979 when we were both diagnosed with Usher Syndrome. This news absolutely devastated my parents. Genetic testing was not available at the time, and we finally learned that we have the 1F gene many years later after extensive genetic testing.
When I was younger, I enjoyed a lot of things in life – playing tennis, water skiing, jogging, reading, socializing and traveling to new places. My vision began to diminish after I turned 40, and I had to give up what I enjoyed doing daily. Because I like to keep myself active, I take a brisk walk instead of a jog to avoid bumping into things. I try to find my new passions to keep my life enjoyable. I am no longer able to read regular fonts. In order to read, I require white or yellow fonts on a black background on a computer and gadgets. I always remember how fast I walked and ran all the time, but today, for my own safety, I use a mobility cane.
I have been coping with Usher Syndrome, but at the same time I have not given up my dreams and eagerly await enjoying new things. In addition, I want to continue seeing places, things and people when I get older. Finding a cure is my hope. I hope you can join us in our efforts to find the cure for Usher Syndrome 1F and fighting blindness.