Bone Tissues Text 1

 

课文(一):关爱“瓷娃娃”

“你能想象人的骨头像一根针那么细吗?”提出这个问题的青年叫黄如方,这个身高不足一米的青年是一种罕见病—- “成骨不全症”的患者。他旁边的女孩儿留着长卷发,声音轻柔,她叫王奕鸥,身高只有一米二,也是一名患有成骨不全症的“瓷娃娃”。

成骨不全症,又叫骨病,发病率1/10000~1/15000,患者因先天胶原纤维病变,骨质薄脆,骨密度低,骨骼强度耐受力变差,容易骨折,就像易碎的瓷器。长期频繁骨断裂往往导致骨畸形、身材矮小,严重者会有行动障碍。

王奕鸥和黄如方都有健康的父母家人,却因为难以解释的基因突变,成了“瓷娃娃”。

1岁到16岁,王奕鸥骨折过6次,骨折造成的骨畸形,使她失去了正常行走的能力,直到19岁,一个成功率只有50%的手术给了她重新行走的机会。之后,通过自学考试,王奕鸥拿到了会计和法律两个专业文凭,大学毕业后在北京找到了稳定的工作。

他们虽然是瓷娃娃,但他们并不脆弱。他们虽然身患重病,但他们一样可以拥有美好的未来。他们需要物质帮助,但更需要全社会的理解和尊重。请一起努力来关爱瓷娃娃吧!

 

Chinese Part of Speech Pinyin English
骨头 (n) gǔtou bone
罕见 (adj) hǎnjiàn rare
(adj) cuì fragile
先天 (adj) xiāntiān congenital
胶原纤维 (n) jiāoyuánxiānwéi collagenous fiber
骨密度 (n) gǔmìdù bone density
耐受力 (n) nàishòulì tolerance
骨折 (v) gǔzhé (of one’s bones) to fracture
基因突变 (n) jīyīn tūbiàn gene mutation
脆弱 (adj) cuìruò weak, fragile

 

Text (1): Caring for “porcelain doll”

“Can you imagine a human bone as thin as a needle?” The young man who asked this question was Huang Rufang. The young man, who was less than one meter tall, was a patient with a rare disease called “osteogenesis imperfecta”. The girl next to him with long curly hair and a gentle voice. Her name is Wang Yiou. Her height is only 1.2 meters, and she is also suffering from osteogenesis imperfecta. In other words, she is the so-called “porcelain doll”.

Osteogenesis imperfecta, also known as brittle bone disease, has an incidence rate of 1/10000–1/15000. Because of congenital collagen fiber lesions, patients suffer from thin and brittle bone, low bone density, poor bone strength tolerance and are easy to have a bone fracture, just like fragile porcelain. Frequent bone fractures often lead to bone deformity, short stature, and even movement disorder in severe cases.

Wang Yiou and Huang Rufang have healthy parents and family members, but because of the unexplained gene mutation, they have become “porcelain dolls”.

From the age of 1 to 16 years old, Wang Yiou fractured her bones 6 times. The bone deformity caused by the fracture made her lose the ability to walk normally. When she was 19, an operation with a success rate of only 50% gave her the chance to walk again. Later, through self-study, Wang Yiou got two professional diplomas in accounting and law and found a stable job in Beijing after graduating from college.

They are porcelain dolls, but they are not fragile. Although they are seriously ill, they still can have a bright future. They need financial help, but they need the understanding and respect of society even more. Please work together to care for porcelain dolls!