LIVING WITH STARGARDTS
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Lori from Arizona

Lori’s Story

Hi Everyone! My name is Lori. I am 44 years old and I was diagnosed 4 years ago with Stargardts. I have had to wear glasses from the time I was 16, always being told I was near sighted. I always went every 2 years for my eye exam. Seven years ago, while I was living in Colorado, my eye doctor asked me where I grew up. I told him Arizona. He told me that I had yellow spots in my macula and they are there from growing up in the sun. He told me that they were nothing to worry about, so I never did.

I was going through a divorce and my best friend, Deb kept telling me that I needed to go have my eyes checked. She felt that there was something very wrong, I did also but was not willing to go. I was running into things that had been moved, my driving was getting to where i was scared to drive. I could not make out peoples’ faces. I felt maybe it was just the stress of the divorce. Finally, I went to see my eye doctor. I figured, ok just new glasses again, just some stronger ones. Dr. Dean looked and looked in my eyes. He was honest and upfront with me, there was a problem and he felt it could be Stargardts so off I go to the RS where he confirmed Dr. Dean’s findings.

I am just now getting the help I need. It has taken me 4 years to finally come to terms with losing my sight. I am taking braille and soon to be taking cane travel. I have a CCTV, magnifiers of all kinds, glass magnifiers, the ones that look like binoculars which I think are used for people to drive with. Not me, I will never drive again. A monocular which is great in the grocery store. Braille watch. Now I have let myself be open to all the help that is out there.

I did not tell my friends about this at first. It got to the point where they would call me and say, “Lori why did you not wave at me in the store?” or “Hey, I waved at you and you did not wave back. Are you mad at me?” So finally I told them. From then on they either yelled at me or just came up to me and put their hand on my shoulder and told me they were there.

I moved back home to Arizona after 20 years. My family is here. It is the best thing I have done, they all have been great with this. My brothers do say “Well gosh, Lori does just fine. She does not walk into things etc”. Kinda funny, I just tell them “Yeah, I should have been an actress. Just do not move anything in your home. If you do let me know otherwise you will see me fall”. I have a great friend in Debbie who lives with me. I have 2 sons. One, Courtney is a M.P. stationed at Ft.Stewart. He is soon to be deployed to Iraq. Tyler who is home with me. He is a senior in high school and will be going off to college next year. I have the boys checked every 2 years. So far nothing has shown up. My dad’s aunt and 2 cousins have Stargardts. We never knew what it was they had, just knew they were blind. I also have ancestor who was in the civil war who went blind.

I would love to talk to any and all.

Lori
My e-mail address is: apache4545@yahoo.com.