When I was 16, I was immersed in a world of Savage Garden, velvet shirts and mascara that made my hair limp but many shades lighter. Living with Ichthyosis was a reality – but I didn’t consider it to be such a part of my identity then – not like it is now. I also desperately wanted to fit in, but I didn’t think I could do it and embrace my skin condition. Here’s the thing. I didn’t see anyone else like me – in the street, in the media, on film, and talk of a cure came from everyone from doctors to strangers, so how could I accept myself? I wish I knew what I know now 20 years later.

Here are three things I’d tell my 16 year old self…