Lucy Edwards was 17 when she lost her eyesight after being diagnosed with incontinentia pigmenti as a child. Since then, Lucy has amassed 781,000 subscribers on YouTube, 1.8 million followers on TikTok and became the first-ever blind presenter to host BBC Radio 1 in 2019. Here, she tells OK! her story…
“Most of my life I’ve been in and out of eye hospitals. I was diagnosed with a rare genetic condition called incontinentia pigmenti when I was a child. At the age of 11, my retina detached in my right eye, then at 17 I lost sight in my left eye due to retinal detachment.
Losing my sight was a massive loss. I had a breakdown and quit law school. I was on 100mg of Sertraline [an antidepressant], stayed in bed, not really functioning.
My parents and now-husband Ollie were so worried. Ollie used to say, “I know Lucy’s in there. You just need to believe that you’ll feel the sunshine again, even if you can’t see the sun.”
I actually dumped Ollie when we were 16 because I was losing my eyesight and didn’t think he could deal with it. He told me that I couldn’t tell him what he could deal with and wouldn’t go without a fight.
He’s been beyond supportive – we got married earlier this year. Our guests even wore blindfolds!
When I was 20, I joined the BBC on its Extend In News programme. My boss was blind, as were some of my colleagues, and I felt accepted. Little by little, I got my confidence back. I love being blind. I think that if you don’t think that way and this is your reality, then what is the alternative?
I grew up loving makeup but when I lost my eyesight, nothing was accessible because every bottle felt the same. Then when I became an ambassador for Pantene it was massive for me. After nine years of blindness, when I scanned a Pantene bottle using the NaviLens code I burst into tears. That was the first time I was able to distinguish between shampoo and conditioner in a shop.
I think we are so much further forward when it comes to inclusivity since the pandemic. The day we went into lockdown was the seven-year anniversary of losing my eyesight. During that time, everyone knew what it was like to have a world that they didn’t recognise. We still have a long way to go with packaging, but I feel like brands are hearing us. If we could also put Braille on everything, that would be amazing.
If I could tell 17-year-old Lucy anything, it’d be that it’s going to be OK. You will thrive again, I promise.”
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