Stacey’s Story

Hello,
My name is Stacey. I’m a 39 year old female that was just diagnosed with Stargardt’s. I went to get a new pair of glasses a couple of weeks ago, but let me go back a bit…

When I was in 2nd grade, the teacher wrote home saying that I was having trouble seeing the board. I also had difficulty seeing in the dark. My parents were very poor and going to any doctor or dentist was unheard of, so needless to say, years went by before I finally made it to a eye doctor to get my vision checked. I was in 6th grade when I got my first pair of glasses. I was told that I was near sighted and had an astigmatism in my right eye and that my left eye was lazy. They said glasses should fix the lazy left eye though. Unfortunately, our dog chewed those glasses up about 3 weeks after I got them which I was punished for leaving them on the coffee table. Like I said, we were poor, so it was years till I saw an eye doctor again.

At 15, I saved up and bought myself a moped and went to get my riders permit from Secretary of State. I passed the written part just fine, but couldn’t pass the eye test. They told my mom that I needed glasses. Needless to say, I didn’t get that riders permit because glasses were not in the budget.

At 16, it was time to drive! I HAD to get glasses to get my license. I saved up and went to the doctor and got my own glasses. I didn’t really have anything to check my prescription against, so I figured I was fine.

We’ll skip ahead now till I was in my mid twenties. I was working at a car dealership and RK surgery was the new “IN” thing. Everyone from 18 year old porters to 65 year old salesman were going and getting RK to get rid of their glasses. Not to be a guinea pig, I waited and waited to see if anyone had any issues. Finally, my boyfriend at the time got it done. He walked out of his surgery and could see great. Later that day he went to a U of M game and he was amazed at how well he could see. I had noticed that my vision was getting worse and was going to be needing new glasses soon anyway, so I said what the heck, let me check this RK thing out. I went in and was evaluated doing many tests. They came to the conclusion that I was a candidate for RK, but that my right eye may not get quite to 20/20 vision. They said I should be able to go without glasses though. So I set up the appointment.

I went in to get my surgery. During the surgery, they tell you to look at the light. Well, I told them that the light was blurry and the minute he made an incision, I couldn’t pin point the center of the light anymore. The doctor instructed me to just keep looking straight then. When they were done, they put me in front of the letters on the wall and I couldn’t see a thing. I was WAY worse. I also could barely open my eyes because the light was killing me. I was told to go home, go to bed for the whole weekend and they gave me pills to sleep because my eyelid would work like a band-aid and heal my eye and that I should be much better on Monday. I was a mess all weekend. I had to have someone put my drops in my eyes because I couldn’t open them due to the light bothering me so much. After all the healing was done, I was still having major light issues. I went back to the surgeon and he tested my sight and said the left eye took perfectly, but they needed to do an enhancement on my right eye. They did my right eye 3 times total before I said enough is enough. Mind you, I waited and waited to get this done because I figured it was to good to be true and it was… for me. I was the only one out of about 40 people at the dealership that had any issues. Go figure. I had to wear a patch over my right eye for a month and had to put several drops in a day for 3 months. My vision started improving though except I was seeing aura’s around street lights and my night vision was still bad. I was still light sensitive as well. About a year later, I went to Secretary of State to renew my drivers license. I passed the eye test with no corrective lenses. I was on cloud nine.

We’ll skip ahead to my mid 30’s. My night vision seemed to be getting worse. So I went to the eye doc to see if there was anything they could do to “brighten things up” for me. They did an eye test and said that because my right eye had so many scars, I wouldn’t be a candidate for contacts. I never wore them before, so this didn’t bother me. He ordered me some glasses that had a very weak script and a film to help with glare and brighten things up at night. I got my glasses and they were great… for about a year. Unfortunately, I was laid off from my job and had no insurance for 2.5 years, so I was unable to get back to the eye doc to get a new pair. I figured that the film was just going bad, plus they had several scratches. I got back to work finally a few months ago and got my insurance. So we had time off over the 4th, so I figured I’d go get me some new glasses.

I went to the place, got my eyes examined and the doctor kept looking and looking at my eyes. He then asked if I had ever had my eyes dilated before. I said that I had. He said that he saw something, but would like to dilate my pupils so that he could take a better look. He gave me some drops, told me to go pick new frames and then come back. When I returned he looked and looked and looked and finally stepped back and told me that he sees red spots on my retina and that he has never seen anything like it before. Mind you, this was not a young doctor just out of college. He was probably in his late 40’s, early 50’s, so I was a little alarmed when he said he had never seen anything like it before. He said he would like me to go see a specialist. He wanted to make sure I was going to go, so he called and made the appointment.

Last Wednesday, I went to see the specialist. Again, this doctor looked and looked, dilated and looked and looked some more. He stepped back and had a puzzling look on his face. I asked him what it was. He said that he wasn’t sure yet and that he needs to run more tests. They did some that day and then scheduled me to visit another office of his to get further tests done. I asked him if he saw the red spots too. He said they aren’t red spots, but he could see why the other doctor thought they were because there is redness around the whitish/yellowish spots at the back of my retina. He then started asking me if anyone in my family has gone blind or had any problems seeing. I told him my oldest brother was born cross-eyed and had surgeries as a baby to try to correct that, but that he’s legally blind because of that, but that’s all I knew of. Now I’m REALLY scared. I leave the office crying, went home and started doing searches online for spots on the back of the retina. The only things that came up were macular degeneration, cancer and Stargardt’s. I start reading a little about it and think, boy… this sounds a lot like me. Of course, all my friends are telling me I’m crazy, I’m over reading into this and that it’s probably nothing. There’s no way I have cancer or Stargardt’s! It’s too rare, etc… I was hoping they were all right.

So this brings me up to yesterday when I went to his other office where they FULLY dilated me and then took pictures, then shot a dye in my arm and took pictures again and then again a few minutes later. I asked if I would have any results today. The woman said she would get the doctor so that he could look over all my test results and see if he’s come to a determination yet. He comes in, reads through my now pages and pages of my file and then starts examining my eyes again. He looked and looked and looked and stepped back and told the nurse to check to see if U of M took my insurance and if so to get me an appointment ASAP. He then starts asking me again if I’m sure no one has “gone blind” in my family. I say to him, “Why? You don’t think I have Stargardt’s do you?” He seemed shocked that I knew the name and asked me where I heard of it from. I told him I did some research online and figured it was what I might have. He then said Yes, I do think you have Stargardt’s. I started bawling. He tried to calm me down and told me that he wouldn’t be taking my drivers license away today or anything. He said he has never diagnosed a patient with it, so he wants me to go to the university and get a now 3rd opinion to make sure. He said he’s studied it and is pretty sure that I have it, but because he never has had a case of it, he wants me to see someone who has to confirm it.

I have 3 brothers – none of which have ever been diagnosed with it. My oldest brother is the one that is cross eyed, then the next brother has worn glasses for as long as he can remember and has mild color defincies and the next brother has a slight prescription and also has color deficiencies. I have since told them they may want to get checked again to make sure since it seems to be hereditary.

I’m wondering if anyone out there has had double vision when they dilate your pupils? I couldn’t see anything for about 3 hours after each time they dilated me. And since the first dilation, my vision seems worse. Maybe it’s in my head, but I don’t think so? Also, if anyone out there has had a late diagnosis like me, how fast did your vision deteriorate? The thought of losing my drivers license is pain staking… which then would lead me to believe I wouldn’t be able to work either. How would I get there?

I’m glad I found this website as all of your stories have been helpful for me to better understand what is to come. My vision isn’t terrible yet, but the glasses I picked up last Friday are a lot stronger than my last pair, that’s for sure! So in the last 4 years, it’s gotten much worse and I continue to have major difficultly seeing at night and have become very sensitive to light like I was after my RK surgery, so I wear sunglasses most of the time outside now. I don’t drive at night unless it’s somewhere that I know and close to home. If it’s raining out, I don’t leave the house. I can’t see anything in the rain.

I hope to find out more in two weeks at my next appointment.

Thanks again for all of your stories and I pray for all of us that they will soon have a cure for this disease.

Update – Went to the University of Michigan Kellogg eye center August 2nd. After a couple hours of testing, the doctor came in and told me he was not the correct person for me to see, that I needed to see the Stargardt’s Specialist. I am going back to see a different specialist there on August 16th. They said they will be doing blood work on me and then also a ERG or EGR test. I’ve read a little on it and was just wondering if anyone out there has had this test and what I should be expecting. They also told me that after they get my blood, they won’t have the genetic results back for 10 months to a year. Has anyone else ran into this? That seems like a very long time.

Stacey from Wayne, Michigan
Feel free to e-mail me at: FishenVixen@yahoo.com.