I was diagnosed with Stargardt’s disease in early 2012. From what I have read, my case is typical because it took years and multiple doctors to get an accurate diagnosis. What makes my case unusual is the fact that I was fifty years old when I was finally diagnosed.
I thought my vision was fairly normal until I turned forty. Now that I look back on it, I realize that I had vision issues before turning forty. I had heard so much talk about over forty eyes that I just passed my bad vision off as that. A few years ago I was getting a regular eye exam and the doctor said that he was seeing something in my retinas. He called another doctor in to look and neither one knew exactly what was going on. This doctor referred me to Dr. Gregory Kozielec at The Retina Institute of Texas in Arlington. The way his office operated was horrible! I waited for hours to see him. When I finally got to see him he did a fluorescein angiogram. He told me that I had age related macular degeneration. This frustrated me because I was too young to have ARMD. He said that all I could do was take vitamins and come back in 6 months. I went back 6 months later to another packed waiting room with people saying they had been waiting up to three hours. I waited over an hour myself before I went to the receptionist and told her that they were disrespecting all of their patients and that I would no longer be one. I walked out because I knew he was not going to do anything for me anyway.
Several months later a family member recommended Dr. Lee Anderson at Texas Retina Associates in Fort Worth. Dr. Anderson did not just pass my symptoms off as age related macular degeneration. He knew there was something more going on. He took my case to his review board and Dr. Karl Csaky requested to see me in Dallas. The diagnosis of Stargart’s finally came from Dr. Csaky at Texas Retina Associates in Dallas. DNA testing has recently (March 2013) confirmed that I have the mutation in my ABCA4 gene that is responsible for the disease. I have read many stories of misdiagnosis or how it took years to get a proper diagnosis and I am no different. The diagnosis of Stargardt’s actually turned my attitude around. I had been told that I had early onset macular degeneration, but now I was being told that I had a very late onset of Stargard’s. I instantly went from the bad end of one bell curve to the extreme good end of another. It made me feel blessed instead of cursed.
Since I was so late in showing signs of Stargardt’s disease I was able to establish a career doing something that I love. The problem now is trying to figure out how to prolong my career. What I do is entirely related to shapes and geometry. I design golf clubs for Nike. I work at the golf club design and development facility that Nike calls The Oven. I design and build putters for Tiger Woods, Rory McIlroy and many other golfers. At this stage of my disease I have blind spots, flashing white areas and I see waviness in straight lines. This is a huge problem when assessing whether lines and shapes in a design are accurate or not. It is frustrating that my vision is just good enough for me to appear as if I have normal vision to others, so expectations stay the same even though my vision is deteriorating.
I am apprehensive and optimistic at the same time regarding the future. It is getting more and more difficult to perform at the level that I am accustomed to. The good thing is that we do our best work when we go outside of our comfort zones. It is hard to voluntarily place yourself outside of your comfort zone, but Stargardt’s leaves us with no choice. I know that I will be forced to do things in new ways. Stargardt’s is an opportunity to find out things about myself (good and bad) that I would never have known without this disease. My most beloved activities will be impossible soon. I love to ride motorcycles and scuba dive. I would have done these things for the rest of my life and probably not have explored other interests. Now I will have to find new activities that I would never have tried without Stargardt’s. Don’t get me wrong, I don’t want this disease. It definitely makes life more stressful. I just have to think that life wouldn’t be very exciting if we didn’t have any challenges to spice things up a bit.
It is good to know that there are other people dealing with this disease. Stargardt’s affects less than 0.01% of the U.S. population, so none of us are likely to have friends, neighbors, or even family members to consult about coping with this disease. That’s what makes this site such a blessing.
Thanks for reading,