2014.03.05【英译中】Children face rare diseases with bravery

发表于:2014-03-05 14:56 [只看楼主] [划词开启]

Children face rare diseases with bravery

孩子们勇敢面对罕见疾病

Being diagnosed with a chronic disease -- any disease -- is hard. But imagine first spending months or years going from doctor to doctor, trying to figure out what's wrong. Then, in the end, being diagnosed with a disease few people have ever heard of.

被诊断患有任何慢性疾病都是很困难的。可是设想如果花数个月或数年去找医生,逐个逐个的去找,试图找出病错。然而最后,被诊断出一种很多人从未听过的疾病。

Now think about all that happening when you're just a kid.

现在想象一下如果这一切都发生在你幼年时期。

Nearly 30 million people in the United States have a rare disease. What qualifies something as a rare? It's a specific disease or disorder that affects fewer than 200,000 Americans, according to the National Institutes of Health's Office of Rare Diseases Research. Scientists have identified more than 6,800 of these diseases worldwide.

在美国接近三千万人患有罕见疾病。什么才算罕见?根据罕见疾病研究的健康中心国际机构,一种特殊疾病或障碍影响少于20万美国人就算罕有。科学家已经确定在全球有超过6800这些疾病。

In honor of Rare Disease Day, CNN asked readers to submit their stories. We were inspired by these children living with rare diseases. They endure stares, disbelief and debilitating symptoms as they find joy in life's simple pleasures. Here are a few of their stories:

为了纪念罕见疾病日,CNN要求读者提交他们的故事。这些患有罕见疾病的孩子们启发了我们。在他们忍受着奇异目光,不可置信和衰竭性的症状的同时,他们发现了生活乐趣和简单快乐。以下是他们故事的其中几个:

Mitochondrial myopathy

线粒体脑肌病

The fact that Sam Brinneman, 16, is alive and well is inspiring all on its own, says his mom, Chris. The Brinnemans knew something was wrong within days of Sam's birth -- he had a weak cry, wasn't nursing well and was "floppy," Chris says. It took three years for doctors to diagnose Sam with mitochondrial myopathy.

他的母亲克里斯说,16岁的Sam Brinneman活得很好的原因都来自于它的启发。Brinnemans的家人在山姆出生没几天就觉得有点不对, 他有微弱的哭声,没有护理好和有点松驰,克里斯说。花了三年时间医生才诊断出山姆患有线粒体脑肌病。

Since then, Sam has exceeded everyone's expectations. He's currently a sophomore at a rigorous college-prep high school in Fort Wayne, Indiana. He participates on the school's speech team and in architecture club. Last year he was the state's Goodwill Ambassador for the Muscular Dystrophy Association.

自那以后,山姆超出了所有人的期望。他现在是印第安纳州韦恩堡一所严格的高考中学的二年级生。他参与学校的演讲对和建筑俱乐部。去年,他是肌肉萎缩症协会的国家亲善大使。

"He was so deathly ill at times as an infant and toddler, that he constantly amazes me with his abilities," Chris said. "The thing that makes me most proud is the fact that he teaches acceptance wherever he goes. Because he is so open about his disease and so willing to share, he has rarely -- next to never -- been teased by his peers."

在婴儿时期,他病得很厉害,可是他的能力一次又一次的让我吃惊,克里斯说。让我最自豪的是,他到哪里都传授接受。因为他对于他的病情都很公开而且很愿意分享,所以他很少,甚至从来没有被他的同伴欺负。:

Sam struggles on a daily basis to get enough calories for optimal nutrition. He wears a breathing machine to bed to treat his sleep apnea. His parents are diligent about keeping him away from sick people, as his immune system is weak.

山姆每天都为获得足够的热量以达到最佳营养而争斗。他戴着呼吸机睡觉来治疗他的睡眠呼吸暂停。他的父母都努力的让他远离生病的人,因为他的免疫系统较弱。

Yet Sam never uses his disease as an excuse, his mom says. "He has spoken with groups of all sizes, spreading the message about (mitochondrial diseases), including the need for quicker diagnosis, the need for treatment and the hope for a cure."

可是山姆从来没有以他的疾病为借口,他的母亲说。他曾与各规模的群体传播有关线粒体疾病的信息, 包括需要更快的诊断,治疗的需要和治愈的希望等消息。


source: http://www.cnn.com/2014/02/28/health/rare-disease-day-irpt/index.html?hpt=he_c2

分类: 英语

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