I am 32 years old and I was diagnosed with stargardts when I was 13. I showed the symptoms of a lazy eye at 7 and had to wear a patch on one eye for an entire summer to try and fix it, but between the ages of 12 and 13 my eyesight had deteriorated so much that my family eye doctor didn’t know what to do. He sent me to a retina specialist who told me I was lying and just trying to get attention from my parents. My mother was so incensed with the doctor I think she actually wrote him a very nasty letter after I was finally diagnosed.
I have lived with this disease for 19 years and while I would like to say it’s been a fairly easy ride, I can’t. Most of the time I really don’t think about how bad my vision is or how it affects my life. I barely even remember being able to see well before the age of 7 so for me it’s just about all I’ve known. My eyesight decreased gradually over the years but it has held steady for the last five years or so. I’d be lying if I said I wasn’t afraid of my sight getting even worse, but there isn’t a whole lot that can be done about it and well, there are people who have a lot less vision then I do.
I am not married but I have been with my boyfriend/fiancé for over ten years and we have a 7 year old son, Logan. He hasn’t shown any signs of the disease and I pray he never will. His father has excellent vision so I am hoping those genes will prevail.
I have only ever met one other person with Stargardts and it was a long time ago. I also don’t know of anyone in my area who has it, so finding someone who really understands the frustrations of the disease is rather difficult. My boyfriend is extremely helpful to me though and understands what my limitations are sometimes better then I do. There are days when I get so frustrated I want to scream but I try to keep in mind that the only thing holding me back is myself. Thus I find ways to continue doing the things I love like crochet, website design, and reading to my son.
Anyway, it is just nice to finally be able to share my story with other people who know what I am going through and to also give some hope to those who are just beginning their journey with Stargardts. You can have a life with this disease and you can live it to the fullest extent. It may take a little more determination and patience, but it can be done.