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Katie: How sharing my retinoblastoma story helped me

by | Nov 7, 2022 | News

Katie’s lovely words on the affect telling her retinoblastoma story has had on her life left us tearing up! We are always looking for new voices for our social media and website, so do drop us a message if you’d like to contribute 🎗

Katie said, “Opening up about having retinoblastoma is one of the best things I’ve ever done. Connecting with other families who have been and are still coping with Rb is beyond inspiring. Because to say the truth…before, I used to be ‘Hard to Fit In Proud to Stand Out!.’ Between everything including my experience with Encephalitis and Epilepsy, even though it didn’t make me any different to any other child, it has taken me nearly 20 years to talk about Rb roughly and share my story with the Childhood Eye Cancer Trust. It took courage to talk about it. But I thought, if I didn’t, who would? Not many have heard of retinoblastoma and know what it actually is, and neither would I if I hadn’t have experienced it first hand. But sharing my story has made me even stronger. Yes, I do get an off day feeling ‘ughh’ when my prosthetic gets sore or gungy, or uncomfortable when getting a new eye that tends to take time to get used to the socket. But yes that’s life with a prosthetic eye…and that’s how life will be 💙🤍”

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