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  1. My RP Secret

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

    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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  3. Trail Blazing the World of Blind Skimboarding

    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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  4. Changing the World, One Person at a Time

    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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  5. Stand by Me RP

    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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  6. Beginning to an End

    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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  7. Learning from the boss – who just happens to be blind

    Years ago – I guess maybe 20 now, I had a boss at a major insurance company who had lost his vision to retinosa pigmentosa.  Because he was a gifted auditor, he was made lead on a huge project that I was also a part of.  This project included creating a project hub on two floors of a newly constructed building, setting up multiple equipment stations, scanning images, burning CDs (what was then a completely new technology), establishing 2 call centers, documenting security, and a host of other high-level responsibilities….

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