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Tag Archives: Retinitis Pigmentosa

  1. Welcome to My Blurred World

    March 13, 2019 - By Elin Williams

    I’m Elin, a 20-year-old blogger and student from the UK. Some of my passions include helping others, writing, beauty, fashion and music, just to name a few. I’d consider myself to be your average 20-year-old since I like to do a lot of the things that others my age do, I just happen to be blind. I was diagnosed with a degenerative condition called Retinitis Pigmentosa when I was six years old – three years after my parents noticed that I couldn’t see certain things, especially in the dark. I…

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  2. The Top 5 Benefits of Learning to Read Braille

    January 30, 2019 - By Jasmyn Polite

    Imagine being in the dark on a stormy night. Everything is out and there’s nothing else to do but sit in the dark. All of a sudden, you pick up a book to read. However you know that you can’t see the book because it’s dark. But it’s different because this book has a special quality. You open the book and realize that there are “dotz” in it! These “dotz” are known as braille! You’re happy because you don’t have to use your eyes to read, and you won’t be…

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  3. A Look Back at 2018: These Are the Stories of the #BlindNewWorld

    December 19, 2018 - By The BlindNewWorld team

    2018 has been another incredible year in the BlindNewWorld. We love hearing – and sharing – your stories of adventure, triumph, love, family, learning and so much more. These stories are what keep us going – and what keep our community strong. And we don’t want you to miss a single one of them. So to close out the year, we’re bringing together the full collection of 2018 #MyBlindStory posts. Get to know each and every one of the people who have shared their stories with us this year. And…

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  4. Roll Forever

    October 10, 2018 - By Dan Mancina

    My name is Dan Mancina, I am from Michigan outside of Detroit. I was born with retinitis pigmentosa (RP), a disease that has deteriorated my vision throughout my life. I have lost about 95 percent of my vision so far. I have been skating since I was about seven years old and am now 31. When I had lost the majority of my functional vision about six years ago, I stopped skating all together, and would not even leave my house without a human guide. I felt very lost and…

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  5. My RP Secret

    August 15, 2018 - By Dave Steele

    My name is Dave Steele. I’m a singer and poet from the UK who, since being diagnosed with retinitis pigmentosa in 2013, has dedicated my life to raising awareness for visually impaired people worldwide through poetry and music. Following is a poem I wrote for my daughter, Ellie. The Secret It took me years to come to terms with how my eyes declined Through stages of acceptance of slowly going blind But nothing I could ever do would allow me to prepare To tell my little girl the thing I…

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  6. Strong, Comfortable, Confident – and Ready to Do It Again

    May 9, 2018 - By Begoña Manterola

    My name is Begoña Manterola and I’m from San Sebastian in the Basque Country of North Spain. I used to work as a hairdresser. When I was 35, doctors told me I had Retinitis Pigmentosa – but it wasn’t until I was 50 that I had to stop working because I was becoming completely blind. Since then, I have focused my life on reinforcing my personal growth. I do theatre, yoga, Pilates and hiking. Recently, I decided to tackle a new adventure – snowshoeing.   On this trip, we snowshoed…

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  7. Trail Blazing the World of Blind Skimboarding

    April 11, 2018 - By Kai Owens

    My name is Kai Owens, and I have an aggressive form of Retinitis Pigmentosa (RP). RP is a form of vision loss that causes night blindness, blind spots known as scotomas, and loss of central acuity and peripheral vision. After being diagnosed in the third grade, I began learning braille, typing, and screen reading computer software – and I decided that no matter what happened, I wasn’t going to let it stop me from doing what I wanted to do. Ever since I was a young kid I have been…

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  8. Changing the World, One Person at a Time

    May 10, 2017 - By Sarah Clark

    I was 17 years old when I was told that the life I had planned for myself was simply not possible. I was sitting in an ophthalmology exam room after hours of testing, waiting to get answers. I was very aware that my vision was not normal. I had been wearing glasses since I was in first grade, and every year when I visited the optometrist, they told me I needed a stronger prescription. I had told numerous people, both in school and at home that I could not see…

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  9. Stand by Me RP

    May 3, 2017 - By Dave Steele

    My story began three years ago when, at the age of 38, I was diagnosed with Retinitis Pigmentosa. My life changed forever that day and it was the start of the biggest challenge my family had ever faced. Within the first week of my diagnosis I was declared severely sight impaired (legally blind) and lost my job after being told I’d never drive again. We were plunged in to debt and I fell in to a spiral of anxiety, depression and isolation as my sight began to decline rapidly. We…

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  10. Beginning to an End

    April 26, 2017 - By Jamie Gibson-Barrows

    My name is Jamie. I wrote the poem below several years ago. It reflects my experience when I was diagnosed with RP (Retinitis Pigmentosa). I have come a long way since the diagnosis and have embraced my new life with little sight. I have since retired from a job of 28 years. New doors have opened within the blind community. I volunteer and am working part time at a blind center in my area. I am attending city college for the first time in my life and a member of…

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