When identical twins Joy & Jenelle were diagnosed w/ RetinitisPigmentosa, which caused them to lose their sight over time, they felt misunderstood by others. Read how they’re opening people's eyes to the stigma of blindness.
We were toddlers when our parents noticed something was off. During the day, we were carefree and curious — identical twin sisters exploring the world and touching everything we could see. But at night, we became shy and cautious of our surroundings.. But further testing when we were 5 years old revealed a different story.
We don’t remember having a conversation with our parents about having RP. Later, our parents would tell us that they avoided talking with us about it becausewould get upset. In truth, we longed to talk about it and to ask more questions, but we didn’t know how to. Our vision continued getting worse as we entered college, and we often didn’t see when people waved to us on campus. Our peers sometimes got the idea that we were ditzy, rude or stuck up. There were times when one of us would catch sight of the other unconsciously ignoring someone who was trying to get her attention. If one of us missed a wave on campus, we’d later say, “Oh, that must have been my twin sister.
As we began our careers, our shared disability became more difficult to hide. But we didn’t stop trying because we continued believing the false narrative all around us that being blind or having low vision is shameful. It wasn’t until we became parents ourselves that we finally began to face years of denial and hiding. We were stuck at home and couldn’t just hop in the car to meet up with other moms or grab a needed item from the store. Life often felt lonely. Then Jenelle had the idea to begin sharing our stories on a. Shortly after we started blogging, we decided to pursue experimental treatment in Vancouver, and we wrote about our 10 days of acupuncture treatments.
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