When I was 22, I remember driving my car, and all of a sudden, things started to disappear. I was meeting my father [Raymond Renaud, former hockey player for the Montreal Junior Canadiens] for lunch, and all I could think about was, "Wow, there is something really wrong here." When I met with my father, I told him of my difficulties driving, and his initial instinct was correct: see the ophthalmologist as soon as possible. Within two days, I was having a discussion with my ophthalmologist about why I could not read the chart anymore, and why so sudden?
I was an avid reader. I spent a good portion of my time indulging in classic literature. I averaged close to one book a month. I loved going to the bookstore and filling my mind with new and interesting ideas. I remember looking at this grade school book that my doctor was having me read and thinking, "I sound like I am illiterate." That was extremely embarrassing, as I assured the doctor that I did indeed know how to read.
I continued with the graph paper test and noticed that a giant circle was missing from the chart. The doctor asked me to focus on the dot in the middle as he moved his pen closer and closer to the middle. I could not see his pen. I was starting to get very worried now. My doctor recommended that I go see a retinal specialist (RS), and I agreed. Surprisingly, the doctor was able to get me an appointment the same day, which as we all know almost never happens. I met with the RS, and he recommended that I take a gambit of eye tests at the local hospital. I agreed, and off I went.
Two weeks later I went in for testing. This process took close to five hours, and after the angiogram I felt like I was going to die. The dye injection made me nauseous, and I was not a happy camper. Three weeks later, I met with the RS, and right before I met with him, I remember drawing a donut on a piece of paper and telling my father that that was what my vision appeared to be like.
I entered the room and waited for my RS. He entered, flipped through his papers and said, "It looks like Stargardt's Disease." This was followed with a plethora of questions probing for treatments, other RS's to visit, and the source of the disease. I was floored, as were my mother and father. My initial feeling was anger: "Why did this happen to me?" Anger quickly turned into determination: "How can I beat this thing?" I began researching all materials, publications, newspapers, etc. to find out what I could about my rare disease. When I initially began researching in 1998, there was very little available. Now, three different RS's later, I still seem to know more about my condition than do most specialists in my city.
My parents researched it as well, and together we came up with a complete listing of supplements that were recommended for people with low vision and Stargardt's Disease. I instantly became a pill-consuming machine.
I remember going to an RS in 2001 and the RS recommending me for further testing. I declined, thinking that there was nothing new that they were going to tell me. I recently visited my RS again, and he said the same thing after close to five hours of waiting: "You have Stargardt's disease. I recommend that you up your fish intake." I was looking for some kind of guidance or recommendation for a treatment, and, of course, there was nothing to his knowledge.
I began to look closer and found articles on the MD Support site web site about my condition and the studies going on. I am currently in the midst of collecting as much information as I can.
School
After working for three years toward a Kinesiology degree at the University of Calgary, I switched disciplines, due to a desire to pursue a business background and give myself a completely new challenge. I remember thinking that school would be nearly impossible; but I could not think of that. So I put it aside and decided to just attack each course one at a time. I switched degrees to a Bachelor of Applied Business and Entrepreneurship at Mount Royal College in Calgary, Alberta, and began to take course after course. Due to the lack of relation between kinesiology and business, I was forced to start a whole new degree again.
It took me 2.5 years to finish a four-year degree. How did I do that? I needed help, which I got through government grants and from the learning skills centre that allowed me more time to write exams. I always sat at the front of the class, and I always made sure my professors knew that I had an eye disease. They were all very understanding and willing to help me out in whatever way they could. If notes were posted on the overhead, the professors would usually make a photocopy and give it to me the next day.
Textbooks were tough. The government purchased a scan-and-read program called Kurzweil 3000 and another program called Zoomtext to help me read my texts on the computer. This was a godsend. These days, pretty much any barrier can be overcome. I was completely independent before this happened: rarely asking for help. Now I was in a situation where I needed assistance from technology and even friends at school. Everyone has always been very understanding, and, at times, I cannot believe I have an eye disease.
Life
I believe the social impact of this disease is the most frustrating thing to deal with. Having difficulty recognizing people is extremely frustrating. It is hard to remember someone's name when you cannot completely see his or her face. I now make a habit of telling people I meet that I have this rare eye problem, and to not think I am a snob if I do not say hi to them immediately. Again, people are very unde
rstanding.
When I was thrown this curve ball, I remember trying to avoid the negative side at all costs. I did not want to be thrown into depression, as this would have been counter-productive to what I wanted to accomplish in life. I have lofty goals in life, and absolutely nothing will get in my way.
If you are new to the disease or are still battling it, my words of advice are to not let it stop you from anything. Anything is possible. You may need some assistance, but if there's a will, there's a way. I know you've heard that before, but it's absolutely true. You will become very familiar with this in your travels. I have been battling Stargardt's disease for over five years now, and my activities include the following:
1) Golf. Yes, strange but true. I tell anyone that invites me that I may need their help spotting, and they are more than willing to help.
2) Hockey. I play twice a week. I have the equipment and full face mask. Most people will not even know that there is anything wrong with your vision.
3) Coaching. I coach developmental swimmers, ages 13-15. It has been a pleasure being able to give back to a sport that gave so much to me.
4) Work. I recently completed an internship with an oil and gas company, and they are now considering hiring me on full-time.
Just like in professional competition, if you want to win, all that can get in your way are your own perceived limitations. Too much time can be wasted on "Can I?" when more time could be spent on "I can't believe I did that!" You will absolutely amaze yourself on a daily basis by challenging yourself to do what you thought was originally impossible. And you will, without a doubt, be a source of inspiration for those around you.
Complacency is a disease in itself. I feel that, through my actions, I have helped most of my friends and acquaintances to recognize that their true potential is only limited by their own thoughts. I want to help you, too; and that's why I have teamed up with MD Support to get my story out to the world.
I hope this helps you to know that you are not alone. If you are a young person who has been diagnosed with Stargardt's, or if you care for someone who is, I hope you will write to me, even if only to let me know you are there. This is not an easy battle to win alone, so let's tackle it together!
