Usher syndrome is a rare recessive genetic condition and is the most common cause of deaf-blindness. There is no cure or treatment, unfortunately. Those born with the disease have hearing loss; however, vision loss usually starts in one’s adolescence in the form of retinitis pigmentosa.
Shannon Reyenga has always been deaf, but she didn’t know that her hearing loss was the result of Usher syndrome. She has experienced poor night vision loss, a precursor to blindness in such cases, but was unprepared to learn she had the condition at a routine vision check-up at LensCrafters. Even though Reyenga’s boyfriend knew she was deaf from their first date, she struggled to share with him that she would eventually be unable to see.
“After I learned I had Usher syndrome, I thought I lost any chance of finding love. I struggled with the idea of finding someone willing to face this challenging diagnosis with me. I could hardly face it myself.
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“Why I Didn’t Tell My Boyfriend I Was Going Blind Until I Absolutely Had To”