Karen

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“When I was about eleven, I realized I did not have full vision in my right eye. I remember being with my friend Stacy and asking each other eye doctor questions (“what do you see when you cover your left eye” kind of stuff). I cannot remember if I immediately told my mom or if it was a few days later. Upon my telling her she immediately scheduled an appointment with an ophthalmologist who in turn instructed her to get me to a retina specialist. I ended up in the hands of Dr. Grizzard at USF’s pediatric eye center (back in early 80s). His diagnosis was a detaching retina due to Coats Disease. The leaking blood vessels were eating away my retina. Even after two laser treatments and one cryo treatment (very painful), there was no stopping it. My retina fully detached.

I went through a period in my young adult years that I didn’t keep up with my appointments. However, I began seeing Dr. Pautler in my late 20s/early 30s. During those years, I developed strabismus, cataract, and eventually glaucoma in the same “bad” eye. He referred me to Dr. Guggino who removed the cataract and fixed the strabismus during one surgery. I am still without a lens in that eye, but obviously there was no need to replace it as I have no vision. Unfortunately, I still battle glaucoma. Fortunately, it is contained to the “bad” eye.

My paternal side of the family is filled with eye problems …some with complete blindness and others dealing with the threat/onset. That being said, I always chalked it up to “these dang family genes” and never gave Coats disease a second thought. Ironically my affected family members all live with the same threat, only we each received a different diagnosis (Coats, Wagner-Stickler, RP, MD, etc.).

I have always been able to do everything I want (except hang a straight picture). I am now 43 and have lived with this more than half my life and never worried too much until about eight months ago. I was sitting at my desk and noticed star bursts in my “good” eye. Being through my share of eye appointments, I knew this was something that needed immediate attention. I immediately went to Dr. Pautler and was told that my vitreous is detaching. Needless to say we have both agreed to leave it alone since with surgery we would be gambling with total vision loss. I still see star bursts and floaties (annoying), but Dr. Pautler gives me his undivided time and attention during each appointment and says, thankfully, there are no retina tears and the one small Coats vessel remains stable (not leaking).

Obviously, my fear (but not my worst) is total blindness. My Aunt will most likely be blind in the next year or two and reminds me that some people deal with much worse. I completely agree. I can happily report that neither of my children (20 and 25), nor my sister’s or cousin’s children, show any signs of “these dang family genes”. I hope the trend continues ☺”