Flashback

Adam Pearson – who lives with the genetic disorder NF1 – recalls a family photo in 2003

THIS WAS TAKEN in 2003 when Neil, my identical twin brother, and I were about 18. We used to get our photos done every year because our mother insisted (she’s got a drawer full of them). We might be smiling but that’s because it was always easier to roll with it and look happy than have the ‘chat’ with Mum in the car on the way home.

I was first diagnosed with neurofibromatosis type 1, or NF1 – which is worth less in Scrabble but is a lot easier to remember – when I was five years old. I was in my room and accidentally bounced my head off the windowsill, and it came up in a bump. We put ice on it and didn’t think anything of it. Then I did it again shortly afterwards and it came up with another bump that didn’t go down. At that point we started seeing doctors and asking questions. (NF1 is a genetic condition, and the symptoms develop over time – often the skin is affected, in my case with soft, non-cancerous tumours, as well as a mild pigmentation known as café au lait marks.)

That was in 1990, when diagnostic medicine wasn’t what it is now. I remember one appointment consisted of a doctor reading a dictionary definition of NF1 to my mum and patting her on the hand, saying I’ll grow but the tumours won’t, and by the time I’m 17 I’ll look like everyone else. I don’t know how Mum didn’t kill him!

Primary school was fine for me because, as the condition developed, people got used to me. But when you go to a secondary school with 1,000 pupils, most of whom don’t know you, you’ve got to do a bit of leg work. Fortunately, I was a lot smarter than the kids who gave me aggro. On a scale of one to 10 of how rude I can be, they’d say something that was about a three or a four, and I’d be like, ‘Here’s a 10, go away and come back with a proper insult.’

My brother Neil had some grief too, but he got away with it for the first few years until his own problems started. He also has NF1, but he has the neurological side of the coin: it expresses itself in the form of short-term memory loss. He has epilepsy as well, which developed when he was 15, but we don’t know if it’s connected to his NF1.

Neil and I live in our own circles, but as brothers we’ve both been there for one another. I’m a bit of a prankster, especially when it comes to Neil. We went on a family holiday to Cyprus about a year and a half ago and to annoy him I started taking pictures of my mascot, Sunny Bunny [a blue-and-red-striped toy rabbit] everywhere we went – sunbathing, drinking, partying, playing – and posted them on Instagram. When we got home, I met people at Eastbourne station who said, ‘You’re the guy on Instagram!’

I saw the poster for Changing Faces in the waiting room at Great Ormond Street Hospital in 1994. I’m a big fan of taking control of your medical destiny – the charity helped me to develop coping strategies and introduced me to older people [with my condition]. As I now make TV documentaries and do public speaking, I feel it’s my responsibility to learn more about my condition. There are people in the same situation as me who don’t have the platform or the resources that I do, and who need a voice. I’m always keen to know more about NF1 – I think the more you know, the more empowered you feel.

— Interview by Jessica Carpani Changing Faces is a charity that gives advice and support to people with a visible difference. To donate to Changing Faces through the Telegraph Christmas Charity Appeal for 2018, visit telegraph.co.uk/charity or call 0151 284 1927

Fortunately, I was a lot smarter than the kids at secondary school who gave me aggro

Adam and Neil each suffer differently from the same genetic condition NF1