We're in this together
Twins Adam and Neil were born with the same condition. And as Yvonne Roberts discovers, they both have one defence against it: humour
Tuesday February 15, 2005
The Guardian
Neil and Adam Pearson, 20, are identical twins, but they couldn't be more different. Neil dresses in preppy shirts and slacks, hopes to be a librarian, likes 80s pop, and rises early. Adam prefers jeans, wants to manage a rock band, listens to Kasabian and Green Day and leads a laid-back life.
"Neil had 100% attendance as a schoolboy," says their father, Patrick. "One day, he got knocked over by a car and still insisted in going to school the next morning."
"Adam would have stayed in bed and milked that for weeks," Marilyn, the twins' mother, chuckles. Marilyn is a housing officer; Patrick a quantity surveyor. When Marilyn discovered she was pregnant with twin boys, she was devastated.
"I wanted girls," she says. "I cried when they told me it was two boys. I didn't know how I was going to do it."
"You'd already painted the bedroom pink," Adam teases, and his mother laughs again.
Ten minutes in the Pearsons' house in Croydon, south London, and the family's chief survival tool is easily identified - humour; not just any humour, but a deep, dark vein of highly infectious black humour. Adam and Neil both have a genetic disorder, neurofibromatosis type 1, or NF1, a disorder of the nervous system caused by mutations in a gene also called NF1. Instead of cells growing and multiplying in a carefully controlled way, they grow unchecked.
One in 2,500 people in Britain have NF1, but for 30% the symptoms are so mild that they may not be aware of the complaint. Symptoms may include cafe-au-lait spots, curvature of the spine and freckling.
Disfigurement can also be caused by dermal neurofibromas, bumplike tumours under the skin, and plexiform neurofibromas, disfiguring tumours which, rooted in nerves and muscles, are difficult to remove.
At the age of 15, Neil went to a local youth club, and came back unable to remember where he had been. A year later, he had his first epileptic fit. The chronic memory loss continues. He may go into the kitchen to make tea and forget why he has made the trip. His fits are controlled by finely balanced medication that causes sleepiness.
Adam has an extreme form of NF1. Tumours have spread across his face, causing the loss of an eye and some hearing. Joseph Merrick, the "Elephant man", was wrongly thought to have NF1 (he suffered from Proteus syndrome). In a BBC1 documentary broadcast tonight, When Your Face Doesn't Fit, Adam is shown in hospital, having his 17th operation, this time to "de-bulk" his face of another fibroma and pin his ear back into alignment.
"Let's face it," says his dad affectionately by his bedside, "You're never going to look as good as me." "I have no idea what goes through people's heads when they first see me," Adam deadpans. " 'Wow!' or 'Ugh!'. More 'Wow!', I hope."
"I don't think it's easy to be either of them,' Marilyn says. "People look at Neil and think he's OK and he's not, and they look at Adam and think he's not, when he is."
At 20 months, the twins developed chronic asthma, but NF1 was not detected for several years. On the wall of the sitting room, photographs show the boys at primary school. Apart from a small bump on Adam's forehead, they appear healthy, mischievous twins. Marilyn smiles. "Other mothers might say, 'My sons would never do that.' I couldn't. I never knew what they were up to next. They were very, very naughty." "Bordering on the criminal," Patrick jokes.
A plastic surgeon removed Adam's lump and told Marilyn her son would look perfectly fine when he grew up. "I don't cry very often," she recalls now, "But I locked myself in the hospital loo and cried then. I knew that couldn't be true."
Eventually, Adam was admitted to hospital and a fibroma was discovered growing inside his throat which could have killed him at any time. He now has fun with the scar on his neck; he explained to one curious child that he was born with his head back to front, and he'd had an operation to turn it round.
As soon as the tumours appeared, the insensitive responses of strangers began. Mild-mannered Patrick says it was he who often reacted angrily. On holiday once, a father in a cafe had prodded each of his three children to alert them to Adam. "I went back to their table with Adam, walked around them and said, 'There, you've had a good look now.' Adam would always say, 'Don't worry, dad, chill.' "
"Facial disfigurement is not a unique thing," Marilyn points out. "I say to people, 'That could be you. You could have an accident, go through a windscreen.' We always taught Adam to have eye contact and smile. Make it their problem, not his. But he did struggle - we all did."
Secondary school was a bitterly unhappy time for Adam. He was bullied relentlessly and the Pearsons say the school did little to intervene. "It wasn't major beating up. It was petty name-calling," Adam recalls.
Marilyn tried to persuade Adam to change schools, but he refused: "Perhaps he believed it wouldn't be any better anywhere else."
Had Adam ever wondered, "Why me?" He shakes his head. "That doesn't get you anywhere. It's not going to change the situation. It's not going to produce the miracle cure."
Marilyn works with a devout Roman Catholic whose response, she says, is, "Why not you?" "She says, 'God doesn't give you anything you can't cope with.' " Marilyn chuckles. "I'm not so sure about that."
Adam sought help from Changing Faces, a charity that supports and represents people with disfigurement. It gave him strategies such as learning how to engage the gawkers in conversation. "I don't mind attention," Adam says. "It's bad attention I don't like."
Neil, too, was overcoming huge hurdles. "What happened to him was so cruel," says Marilyn. "He had slogged his guts out and was in the top set in everything. Then, overnight, his memory went. It was NF1. I was told that the memory loss happens to one person in 100 years."
In spite of his poor recall, Neil passed 10 GCSEs, albeit at lower than predicted grades. Now he is working towards the equivalent of three A levels at college. He may never be able to live independently. "I seem normal, but that doesn't mean I don't have problems," he says cheerfully. "I sometimes wonder what it would be like if I looked like Adam and he looked like me."
Adam too passed 10 GCSEs, then his life changed. He transferred to a Christian school, Archbishop Tenison. He had already begun to attend a local baptist church (the family itself is Catholic). In both places, he says, he was accepted for who he was, not how he appeared. "I moved from pessimism to optimism." He also embarked on a hectic social life - so much so that Marilyn feared for his A levels and gave him a telling-off.
"If he has the credentials, it doesn't matter what he looks like," she explains firmly. "If he doesn't then how he appears really does start to matter. His choices are gone."
Adam is now at Brighton University studying business management and, undeterred by asthma and eczema, he says he's happy. He also has a talent for making money. When he was at primary school, his father told him about his own childhood friend who had charged his fellow pupils to see his operation scar. Adam promptly began his own business: pay-per-view. In hospital, he was given Boyzone's autographs. They too generated income, since girls at school paid a pound a time to kiss the signatures.
Patrick now gently tries to check Adam's almost visibly growing confidence. "I'm cool," Adam says. "I don't mind who knows it." "Well, there's confidence," his father says, "and there's arrogance. You don't want to come over as a little shit, do you? Try to act as an ambassador for others with facial disfigurement, not a show-off."
Adam smiles enigmatically. Marilyn says both boys enjoy winding their father up. We talk about the future and having children. While the NF1 in Adam and Neil was caused by a random mutation, they now have a 50% chance of passing it on to their own offspring. "Well, children involves sex and that requires a girlfriend," Adam says laconically. "I tell him he better be nice to me because I'm the only woman who'll ever love him - I don't think," Marilyn chuckles. "The answer isn't a girl. It's the right girl. "
Neil is visibly nourished by the banter. "I wish both my boys had been taller," Marilyn says. "Height matters in a man." "Well, you shouldn't have chosen someone who's five foot six for a husband," Neil retorts.
"Remembering how naughty they used to be, they've not turned out so bad," Marilyn says proudly. "You have to love the child you've got, not the one you think you should have had. And we love our boys."
· When Your Face Doesn't Fit is on BBC1 at 9pm tonight. Changing Faces website:
www.changingfaces.org.uk