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美國選美皇后和她“看不見”的疾病
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2017/3/31 12:21:53

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美國選美皇后和她“看不見”的疾病

The US beauty queen making her invisible illness visible

美國選美皇后和她“看不見”的疾病

Victoria Graham, a 22-year-old student from Manchester in the US state of Maryland, had an untraditional journey into the glitzy world of US beauty pageants.She may look like any other contestant at first glance, but Victoria suffers from Ehlers-Danlos Syndrome (EDS) - a rare genetic condition that affects her connective tissues.

Victoria Graham是美國馬里蘭州曼徹斯特的一名22歲學生，參加過美國的選美大賽。起初，她看起來與其他選手似乎別無二致，但是其實Viatoria患有一種影響她結(jié)締組織的罕見遺傳癥——艾勒斯 - 達洛斯綜合癥（EDS）

Recalling her first competition, she says: "I walked into orientation in a neck-brace, surrounded by all of these gorgeous sky-tall women.I looked to my Dad and asked ’What in the world am I doing here?’... It was comical."

回想起第一場比賽，她說：“我從門口走進去，被那些華麗高傲的女人所包圍。我看著我的爸爸問道‘我究竟在這里做什么？’……這是很滑稽的?！?/font>

Victoria wasn’t always so open about her condition. "Until I left school at 19, I hid my illness from others," she says."I would rather have my legs dislocate than someone see me in a knee brace."But she’s since realised that speaking out makes her feel empowered - and enables her to help others in the same situation.

Victoria并不愿意暴露自己的情況?！爸钡轿?9歲離開學校的時候我都沒有讓別人知道我的病。”她說?！拔覍幵缸屛业南ドw脫臼，都不愿有人從膝蓋上看出我的病?！钡髞硭庾R到坦白她的情況會使她更加有力量，并且讓她能夠幫助那些和他處在同樣境遇的人。

Victoria grew up practising gymnastics and was told she was "too flexible" by her coaches.She became aware something was really wrong after a gymnastics accident when she was 10."I’d get injuries that weren’t normal - things weren’t adding up," she says.

Victoria從小練習體操并且被他的教練說“太靈活了”，在她十歲發(fā)生的一次體操事故以后她開始擔心似乎她真的有什么問題。她說：“我會受傷，這是不正常的事情而不是累積的結(jié)果?！?/font>

EDS is notoriously difficult to diagnose, and she spent three years seeing different specialists, trying to pin down the problem.Eventually her family found a geneticist who gave her a diagnosis aged 13.

EDS是非常難以診斷的，她花了三年時間看不同的專家，試圖解決這個問題。最終她的家人找了一名遺傳學家給她診斷在她十三歲的時候。

“It was weird because although there’s no treatment and no cure, we were ecstatic because we finally had a name for what was going on,” she says.

“這是奇怪的，因為雖然沒有治療，沒有治愈，但是我們是欣喜若狂，因為我們終于知道了疾病的名字。”她說。

It then became apparent that Victoria’s condition was inherited - only then did her mother, brother and other family members find out they also had lesser forms of EDS.

隨后他的母親、兄弟和其他家庭成員發(fā)現(xiàn)他們也有輕微的EDS癥狀，很顯然，Victoria的癥狀顯然是遺傳病。

"My grandmother lived with EDS for nearly 70 years without knowing and my Mom had it 40 years.Nobody should have to live that long before finding out what’s going on with them," she says.

“我的祖母得了EDS，在不知情的情況下活了70年。我媽媽得了EDS40年?！彼f：“沒有人能在得知他們生了什么病的情況下可以活那么久。”

Over a two-year period from 2014, Victoria had to undergo 10 operations on her brain and spine.

在2014年起的兩年時間里，維多利亞不得不在她的大腦和脊椎上接受10次手術。

Victoria’s EDS affects a lot of aspects of her body, including blood flow.She says she has to take 20-25 tablets every two hours. Some are for pain relief, but others are supplements to ensure her body keeps functioning correctly.

EDS影響了她身體的很多方面，包括血流量，她說每兩個小時她就必須服用20-25粒藥片。有些是為了緩解疼痛，但其它的是補充一些確保她的身體保持正常運作的營養(yǎng)。

Despite the severity of her condition, Victoria finds herself often dismissed and discriminated against because of the invisible nature of her illness.

不論她的病情是否嚴重，維多利亞州發(fā)現(xiàn)自己經(jīng)常被解雇和歧視，因為她的疾病的無形性。

At school she consistently struggled with teachers’ unwillingness to make accommodations. And she says she often gets shouted at in public for using a disability parking pass.

在學校她堅持違背老師的意愿去住宿。并且她說她經(jīng)常在學校被吼罵因為用了殘疾人停車通行證。

As part of her efforts to raise awareness and educate people, Victoria now performs a monologue about her condition at pageant competitions.She says she entered her first competition as part of a ’bucket list’ deal with a friend after an operatio.

在選美比賽中，作為她努力提高認知和教育人民的一部分，維多利亞現(xiàn)在在闡述她的狀況。她說，她第一次參加比賽是因為這是一個與朋友一起制作的“遺愿清單”協(xié)議中的的一部分。

She won her first local title just months later and now holds Miss Frostburg - a local title within the Miss America Organization.

幾個月后，她贏得了她的第一個地方頭銜，現(xiàn)在被稱為Frostburg小姐，這是美國小姐組織內(nèi)的地方稱號。

Through this platform she has been able to meet and support young EDS sufferers.

通過這個身份，她已經(jīng)可以和年輕的EDS患者見面并且支持他們了。

“Its not always easy, sometimes you want to be normal - you don’t want to be that girl with those scars on stage,” she says.

她說：“這通常不是很簡單的，有時你想做一個正常人，你不想做一個登上舞臺還有那些恐懼的女孩”。

Despite being only 22, Victoria now runs her own non-profit EDS support group called ’The Zebra Network’.

盡管Victoria只有22歲，她現(xiàn)在已經(jīng)運行著她自己的非營利性EDS支持組織‘The Zebra Network’。

"I was seeing people who were struggling - doctors were often recommended through word of mouth.I saw a dire need for a network of sufferers and for someone to dedicate their life to that "she says."I know I’m young and its a bold decision to make without a college degree - but if someone else wasn’t doing it, I would be that someone."

“我看到正在同疾病作斗爭的人就會向他們口頭推薦醫(yī)生。我看到網(wǎng)絡上有迫切的需要病人來奉獻自己的生命作為實驗去解決這個疾病。”她說。“我知道我很年輕并且這是一個大膽的決定在沒有大學學位的情況下，但是如果沒有人來做這件事，我就會去做”

She explains the network’s name: "In medical school, doctors are trained to think of the common thing when diagnosing through the phrase, ’When you hear hoofbeats, think of horses not zebras.’So if a kid has runny nose or a cough they most likely have a cold rather than a rare form of cancer. But those rare things do happen and are often called ’medical zebras’.So we say, ’Think zebras, because zebras do exist’."

她解釋了她的網(wǎng)絡組織的名稱：“在醫(yī)學院，醫(yī)生在通過簡單詢問病癥進行診斷時，會經(jīng)常認為是常見的簡單的疾病，‘當你聽到蹄聲時，想到的是馬不是斑馬?！瑯樱绻粋€孩子流鼻涕或咳嗽，看起來像患有感冒，而不是罕見的癌癥。但是這些罕見的事情確實會發(fā)生，通常被稱為‘醫(yī)學斑馬’。所以我們說，‘想想斑馬，因為斑馬確實存在’。”

Despite her confidence now, its been a fraught journey to this point for Victoria.

盡管她現(xiàn)在很自信，但達到這一目標對Victoria來說還需要很遠的路要走。

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