My name is Jennifer, I’m 32 and live in Buffalo, NY. I was diagnosed with Stargardts when I was 11. I began having trouble reading the board in school. After countless struggles my teacher encouraged my parents to take me to the eye doctor. On my initial visit I was told my vision loss was a result of puberty! I, of course, continued to have difficulty in school and my teacher pushed my parents to take me for a second opinion. On my subsequent visit I was told I had lazy eyes. I was prescribed glasses and given exercises to do. Meanwhile my vision progressively became worse. The headmaster at the small private school I was attending recommended an alumni student, who was an ophthalmologist, for me to see. Finally I was diagnosed with Stargardts. I was then taken to several other specialists to confirm my diagnosis. I can recall my parents dragging me out of one particular doctor’s office because he was telling them I would have to attend a special school and quit all the sports I was partaking in. I am so grateful my parents did not take his advice!! My parents never treated me different because of my vision. I continued to compete in swimming, synchronized swimming, and diving. I swam on my high school varsity swim team all four years and was even awarded most valuable swimmer my junior year. My memories of competing on the swim team are my only fond memories of high school.
I have two older brothers and two younger sisters. My one older brother was diagnosed with Stargardts disease when he was 16 – he’s now 34, married with two children and one on the way. In addition, my one younger sister was diagnosed with Stargardts when she was twenty – she’s now 22. Unfortunately, I am not really close with my older brother and you would think we would have become so being that we had similar obstacles. However, my younger sister and I are extremely close. We joke around a lot about how we really see . . . the headless people or what I call living in the bubble world (only seeing a few feet in front of you). I guess I’m fortunate to have the strong family support since 3 out of 5 of us kids were afflicted. Obviously my parents are both carriers but we have never been able to trace any history of macular degeneration in the family.
I believe not driving has been the hardest limitation. I take public transportation to work but rely on my parents to take me grocery shopping or run errands. I, time and again, consider moving to a larger city where I could be more independent but always chicken out when I think about relearning my surroundings. I’m not married nor do I have anyone significant in my life that could help make the transition easier.
I have my Masters degree in Counselor Education and I am working with adults with development disabilities. I absolutely love working with this population. The downside is all the paperwork! Extremely overwhelming – my co-workers complain and they are fully sighted! I use a magnifier to read at work and I have my CCTV at home – I don’t know what I’d do without them. My vision is between 20/400 and 20/600 – I can’t see the big E. My vision did worsen over recent years but the only explanation I have been given is that I’m getting older – I’m only 32!
Advice to parents: I would strongly discourage setting limitations on your kids – let them determine them on their own. When I was first diagnosed I remember my father telling me never to feel sorry for myself – those simple words have stuck with me all these years. When I get depressed and start feeling inadequate because I simply cannot do something because of my vision I always remember what my father said to me – it helps.
I’d love to hear from others and how they are dealing with stargardts. My email is: email@example.com.