I believe that most Taiwanese people have read this bit of news... I was quite stunned and felt sorry for those boys who have to fight against their condition throughout their lives, but then again, they are brave, and their parent's love is admirable.  I wish those boys joy and happiness, and I hope everyone who reads or read (past tense) this bit of news will realize how lucky we are and stop being grumpy.

看到這則新聞,第一個感想是好難過... 而且不敢相信會有人得這樣的症狀。可見羅馬尼亞的尼古拉還有暮光之城裡面的吸血鬼都被「美化」了... 其實不是美化,而是原來他們怕光的背後,藏著基因帶有的缺陷以及飽受眾人譏笑排擠等異樣眼光對待這樣的秘密。他們在童年時就無法像一般小孩快樂地在戶外跑跑跳跳,似乎說從小跟同儕相處,其價值觀恐怕被嚴重扭曲,他們的童年活生生被剝奪「單純無知」那樣快樂的權利。還這麼小,就背負著很沉重的心靈負擔。而他們的父母,看到孩子精神跟肉體痛苦,父母肯定更加痛苦。他們因為患有「少汗型外胚層發育不良症」(HED)的關係,連天氣冷想洗熱水澡的權利都沒有。

可是,正因為暮光之城(Twilight)正紅,恰巧這兩個英國小男孩也姓庫倫(Cullen),他們的外表、特徵(無法長出兩排完整的牙齒,只能有犬齒)、不能曬太多太陽的特性,跟吸血鬼很像,朋友們甚至覺得他們這樣的巧合很酷。可是,我不知道他們其他同學能否明白患有這樣缺陷的基因,不是他們的錯,也不是他們願意的。

也許是天真,但我由衷希望藉由這則新聞,大家不要對那些跟一般人不太一樣的人充滿排斥的心理。畢竟他們只是外表上跟大家不太一樣,可是他們也是很可愛、很善良、很搞笑。他們不該被剝奪可以過正常人生的權利。他們應該得到公平對待。

以下是中文新聞跟英文新聞:

「吸血鬼兄弟」白膚獠牙是病

http://tw.news.yahoo.com/article/url/d/a/101110/143/2gnaq.html

"2010/11/10 06:30"  蘋果日報

英國【陳怡妏╱綜合外電報導】英國東部小鎮索德柏立的賽門和喬治庫倫兄弟,跟吸血鬼一樣有蒼白的肌膚、尖銳的獠牙,而且不能曬太陽,因為他們得了一種罕見的遺傳性疾病──少汗性外胚層增生不良症。

學電影改名愛德華

今年13歲的賽門(Simon Cullen)說:「儘管其他人嘲笑我們的長相,但朋友都覺得我們這樣很酷,勸我學電影《暮光之城》吸血鬼改名叫愛德華。」

賽門4個月大時感冒高燒不退,直到6個月大仍沒長牙,醫師診斷他罹患罕見的少汗性外胚層增生不良症,全球僅7千病例。這種病無藥可醫,因患者無法排汗調節體溫,必須一直待在空調底下,外出須擦上高係數防曬油、戴帽子和眼鏡,保護脆弱的肌膚。他長期待在家裡打電動,皮膚白到路人都會盯著看。

母親曼蒂說:「《暮光之城》上映後,大家覺得我們也姓庫倫實在太有趣,因為我的兩個兒子牙齒尖尖、不能曬太陽,好像吸血鬼。」賽門至今仍長沒幾顆牙,小他2歲的弟弟喬治牙齒比他多一點,父母希望可以幫賽門植牙,方便吃東西。

報你知

少汗性外胚層增生不良症

少汗性外胚層增生不良症(Hypohidrotic Ectodermal Dysplasia)是種罕見的遺傳性疾病。該疾病會導致牙齒、頭髮、皮膚、汗腺等發育異常,造成患者毛髮稀少,牙齒稀疏,皮膚無法流汗調節體溫。

英文版

Real-life Twilight: Cullen brothers have rare 'vampire-like' syndrome that leaves them sensitive to the sun

http://www.dailymail.co.uk/health/article-1327716/Real-life-Twilight-Cullen-brothers-rare-vampire-like-syndrome.html
 
By Daily Mail Reporter
Last updated at 7:16 AM on 9th November 2010

They have sharp fang-like teeth, try to avoid sunlight and are called Cullen.

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 an rare genetic condition known as Hypohidrotic Ectodermal Dysplasia (HED).
Simon Cullen (left) and his brother George can only tuck into soft food as their condition has left them with fang-like teeth

Simon Cullen (left) and his brother George can only tuck into soft food as their condition has left them with fang-like teeth
The Cullen family: Both boys have to wear suncream and protective clothing if they go into the sunlight

The Cullen family: Both boys have to wear suncream and protective clothing if they go into the sunlight
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.

Physical growth and movement are unaffected by the condition.

HED can be diagnosed after infancy on the basis of physical features.

There are no 'cures' for the condition but symptoms can be managed.

During hot weather, affected individuals need access to an adequate supply of water and a cool environment.

Early dental treatment may range from simple restorations to dentures.

Prenatal testing is possible for pregnancies at increased risk for all forms if the disease-causing mutation in the family is known.

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

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

'People can be horrible,' said Simon.

'Kids make fun of the way we look. But our mates think its cool.

'My friends keep trying to get me to change my name to Edward like the character in the Twilight film.'

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

Their mother Mandy Cullen, 45, 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.

'We have two sons who have pointed teeth and can't go out in the day, so it is a bit like being a vampire.'

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, ' said Mandy, a cashier.
Robert Pattinson plays Edward Cullen in the Twilight films. Simon and George said their friends think the comparison with Twilight is 'cool'

Robert Pattinson plays Edward Cullen in the Twilight films. Simon and George said their friends think the comparison with Twilight is 'cool'

'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.

'It was like sunburn.'

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

'His temperature was rising,' Mandy explained.

'Because he couldn't sweat we had to keep him cool somehow. We started with cold baths, but it wasn't working, so we had to get him to hospital.'

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.

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.'

The boys cannot take part in sport because of the dangers of overheating and spend their days playing video games indoors.

They have to be careful in strong daylight, covering their delicate, pale skin in high factor suncream and wearing sun hats and sunglasses.
Simon and George show off their pointed teeth. Simon will have false teeth fitted using bone from his leg

Simon and George show off their pointed teeth. Simon will have false teeth fitted using bone from his leg

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.

Although George is two years younger, he already has more teeth than Simon. But Mandy and John are hoping that an operation will help their eldest son.

'We're hoping he'll be suitable for a bone graft,' said Mandy.

'Part of his jaw will be replaced with bone from his leg, which will have artificial teeth drilled into it.

'It will be painful, but it will give him a smile and we're looking forward to it.'

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