As babies, Adam and Neil Pearson looked so similar that their mother often mixed them up. Now, they look so different it is hard to believe they are identical twins. Adam’s face has been left disfigured by non-cancerous tumours that began growing uncontrollably when he was a child.
Despite 33 operations to remove them, the 31-year-old has been left blind in one eye and is losing his vision in the other.
His appearance meant he was called ‘quasimodo’ and ‘scarface’ at school – but he has since grown up to be a TV presenter and campaigner for people with deformities.
His brother Neil also suffers from the same genetic condition but tumours did not grow on his face.
Instead, he battles epilepsy and memory loss so severe he can’t remember what day it is.
The twins suffer from type 1 neurofibromatosis (NF1) , which affects just 1 in 3,000 people.
They have left the medical community baffled – so much so a paper has been written on their case alone.
Tonight, they tell their story in a documentary, Horizon: My Amazing Twin, which follows them trying to find out whether there is any way to stop the disease tearing their lives apart.
Adam has become a well-known figure on TV, producing and starring in shows such as Beauty and the Beast and The Undateables.
He then starred alongside Scarlett Johansson in the film Under The Skin, in order to raise the profile of people with facial disfigurements.
And last year, he was asked by a Slovakian director to star in the band Ciste Tvary’s latest music video.
He has also become a TV personality, calling for more roles for people with disfigurements and campaigning against discrimination on the grounds of looks.
The brothers grew up in Croydon, south London, where they live with their parents Marilyn, 66, and Patrick, 63.
Mrs Pearson, a retired local government officer, said she had no clue they were suffering from a genetic condition when they were born.
In fact, she once got them mixed up while feeding them.
She told the Mirror: ‘I couldn’t understand why Neil was crying and Adam wasn’t interested. And we were looking at some old photos recently and I couldn’t tell them apart in some.’
The brothers were diagnosed before their fifth birthday after Adam fell over and bumped his forehead – but the lump never went down.
Eventually, he was referred to Great Ormond Street Hospital where a scan showed there was a tumour in his neck blocking his windpipe.
This marked the start of many operations to remove the growths, including stints in intensive care Mrs Pearson said were ‘scary’.
Neil did not show any symptoms immediately, and his family believed he may have escaped the condition marring his brother’s face.
At school, Adam was bullied, enduring being called cruel names including Elephant Man, Scarface and Quasimodo.
Speaking previously on ITV’s This Morning, Adam described the misery of being tormented about his looks.
He said: ‘No matter what mindset you’re in, if you’re bullied at school, nothing makes it easy.
‘You’ve got a lot going on anyway, your hormones are going crazy and you’re trying to get your education sorted, whilst trying to find where you fit in in this crazy, crazy world.
‘For me having a disfigurement just compounded that.’
Neil, who admits life was easier for him without a disfigurement, said he was proud of how his brother coped.
Adam was outgoing, able to defend himself using his sharp humour.
But Neil admits he worried he could could develop a facial disfigurement as he grew up.
It would have been easy for Adam to become depressed at the stark difference between he and his brothers’ appearances.
And yet, he never succumbed to bitterness.
He told Mirror journalists: ‘Once I started thinking like them the bullies had won. It’s about the life you have, not the one you don’t. It wasn’t an emotionally productive thing to do.
‘For me, it’s all I’ve ever known. It’s very much a part of me. It would have been like asking: “Why am I this tall?”‘
Symptoms of Neil’s condition did not appear until July 1999, when the twins were 14 years old.
The pair were standing outside a youth club when Neil asked where they had been, Adam said.
At home, Mrs Pearson sent her son to bed thinking he was tired – but over the next few weeks his confusion continued.
He was behaving strangely, continuously asking what day it was and I was sleeping lots.
Doctors discovered he has lost his short term-memory, and revealed he too was beginning to show symptoms of NF1.
A year later, he was diagnosed with epilepsy after suffering fits.
Neil, who now works as a library assistant as a medical school – has to stick to a rigid schedule in order to cope with his memory loss.
If he breaks from the set order of his day he begins to become confused and questions whether he has done things.
Writing for the Daily Mail in 2014, he said he would love to play a Bond villain – but only if he was evil for the way he behaved, and not the way he looked.
‘It would be an opportunity to raise the profile of people like me who have a condition that affects their appearance,’ he said.
‘What I hope I can do is help to create a society where grown-ups don’t hold these immature, naive prejudices.’
The Horizon film shows the brother seeking answers on what will happen to them in the future.
The brothers could develop each other’s symptoms and Adam admits he is terrified of losing his memory.
For Adam, surgery is the only treatment for his tumours.
But during the programme, he was offered the chance to take part in an medical trial in the US, where he would be given medication which shrinks tumours in some patients.
He travels to the National Cancer Institute in Bethesda, Maryland to meet Dr Brigitte Widemann, a research scientist leading the trial.
There, Adam meets a young girl currently enrolled on the trial, who since taking the drug has seen her tumours shrink and her swollen eyes and ears start to reopen.
However, though the treatment could improve Adam’s eyesight one potential side effect is retinal detachment,which could leave him blind.
He is left deciding if the gains are worth the risks.
And back in the UK, Neil discovered his memory loss was not due to NF1 bu encephalitis, an inflammation of the brain caused by a virus.
Now, Adam is focusing on finding a girlfriend- as he hopes to have a family one day.
He says he is going on dates – and is a ‘big fan’ of Tinder.
While his NF1 was caused by a random genetic mutation, there is a 50 per cent chance the condition could be passed on to his children. However, this is a bridge he will cross when he meets the right woman, as options such as adoption are possible.
For now, he and Neil will face the future together.
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