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THE MACULAR
DEGENERATION COMMUNITY

Guadalupe


 

Name
Guadalupe Barrena

Born
November 5, 1976

Home
Mexico

Diagnosis
Stargardt disease

Eyes Affected
Both

Eye Color
Brown

Age at Diagnosis
22

Visual Acuity
20/300

Treatment
Lutein, eye vitamin supplement.

Prognosis or Current State of Vision
The spot grew from 11 to 18 mm since 2001. Visual acuity has changed at different rates. I went from 20/100 to 20/200 in perhaps two years: I was reasonably stable for three / four years, but somehow I am now at 20/300.

Family History
No one in my family has this condition.

Impact on My Life
Since I am now updating my profile, I realize I was much more scared for the first couple of years after the diagnosis. Over time, I have become comfortable, and have assumed the consequences of my condition. Concerns about my career and future in general are now nothing but normal. After several "tests," it is clear to me there might be some impact on my life, but it is not really noticeable. There is always the ocasional surprise of yet another thing I miss, but it's ok.

Positive Effects
The one thing that has not changed is the support I receive from family, friends and coworkers. Perhaps the anxiety I lived in the past reflects on how I explain things to the people surrounding me. I have realized communication is critical.

Adaptations

Bioptics, reading glasses. I wear sun glasses or similar all day, to avoid glare. I am using now reading glasses with a special prism allowing me to use both eyes to read. They are very comfortable. I am going back to school and will use a CCTV to overcome anxiety. I don't want to find myself in a situation where I have to read more than I can. Recently I tried prisms used for stravism - they worked wonders for a while. Now I need more “power” in them, so my nose almost needs to touch the page... not entirely comfortable.

Working

In the past, I was expected to read as much as I could. Later, I had a period of more intense PR activities, and now I am back again to reading a lot. Both activities impose a challenge upon me: reading small print or recognizing faces. I also teach a class and I would apppreciate suggestions on how to figure out students' reactions./p>