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Living life like the 'Cullens'

Updated on: 09 November,2010 09:49 AM IST  | 
Agencies |

Brothers have vampire-like syndrome that makes them sensitive to sun

Living life like the 'Cullens'

Brothers have vampire-like syndrome that makes them sensitive to sun




But this isn't a Twilight film. It is the every day reality for Simon Cullen (13), and his brother George (11).
The boys, from Sudbury, Suffolk, suffer from a rare genetic condition known as Hypohidrotic Ectodermal Dysplasia (HED).

This means the boys cannot sweat, and must avoid too much light to stop them overheating.

Fangilicious

They will never grow a full set of teeth, and the ones they have are sharp fangs.

"People can be horrible. Kids make fun of the way we look. But our mates think it is cool. My friends keep trying to get me to change my name to Edward like the character in the Twilight film," said Simon.

HED is incredibly rare and only 7,000 people in the world have the condition.

Their mother Mandy Cullen, said: "People stare because they're so pale. One lady asked me if they had leukaemia."

She added, "After the Twilight film came out, people thought it was amusing that we're called Cullen."
Mandy and father John, (45), a fleet manager, first noticed something was wrong when Simon was just a few hours old.

"It was a normal pregnancy and labour,"u00a0 said Mandy, a cashier.

"But when he was a few hours old, Simon's body temperature dropped. A nurse placed him under a heat lamp to keep him warm. But after a few minutes blisters started forming on his arms and near his eyes."

Mandy added that when Simon was four months old, he caught a cold, which is potentially deadly for HED sufferers.

Doctors at the West Sussex Hospital suspected it was HED, and when he was six months old and had not grown any teeth, the diagnosis was confirmed.

Second diagnosis
When Mandy fell pregnant with George 18 months later, the couple were warned he may have HED too.
"Simon was doing so well with his condition so we didn't really worry about it," she said. When George was diagnosed we already knew how to deal with his HED."

No sports!
The boys cannot take part in sport because of the dangers of overheating and spend their days playing video games indoors.

Simon, who did not grow any teeth at all until he was five, struggles to chew many foods and the only meat he can eat is sausages.

7,000, the number of people who suffer from HED in the world

What is HED?
Hypohidrotic ectodermal dysplasia is an extremely rare genetic condition, affecting around 7,000 people.
Sufferers have light and sparse scalp and body hair, a reduced ability to sweat and the congenital absence of teeth. These features become obvious during childhood.
As sufferers find it difficult to sweat the condition can cause hyperthermia unless the temperature of their environment is carefully controlled. There are no cures for the condition.

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