2017年3月13日星期一

嗜睡症並不好笑,女孩拍下發病全程 What Narcolepsy Really Looks Like

【認真POST】這段文字和影片,是送給所有同我一樣患有渴睡症既朋友、他們的家人/朋友、與及希望了解何謂渴睡症既香港人。希望您能花數分鐘睇一睇這段片,謝謝!

//嗜睡症並不好笑,女孩拍下發病全程…

相信酸酸們上課時,都曾經有無意識打瞌睡的經驗,甚至什麼時候睡著也不知道,起來可能都下課了;或是躺在床上玩手機,結果不小心躺平了~這種程度我們稱為瞌睡,但要是嚴重一點,那可就是「病」了。

這種又睡眠障礙的病,我們稱為「嗜睡症」(Hypersomnia),喪女今天要介紹的,是其中一種類型:發作性嗜睡病(Narcolepsy)。患者即使在白天,也會無意識地發生渴睡情況,更會無預警昏睡或猝倒,就算他晚上睡的再飽也一樣。

這種病目前還無法根治,患者非常痛苦。可是,不了解病狀的一般人,可能以為他們只是貪睡的人,或是等著看他們突然睡著並出糗,並不了解這種病的危險性。

身為發作性嗜睡病的患者之一,Sarah Elizabeth拍下了自己發作的樣子,希望能讓大眾更加了解這個疾病。

「我有發作性嗜睡病,這讓我非常難過,而且很難向眾人解釋這是什麼病,並且與之抗衡有多困難。大多數人認為這種病很有趣,直到看到實際情況後,他們會變得害怕這個病狀並感到恐慌。」

「會拍下這個影片都是意外,我正在邊看影片邊學舞,而會架設錄影機,是為了記錄自己學到哪裡,以免我中途睡著而半途而廢。別人看來或許很怪,不過我會想將影片分享出來,是為了讓更多人了解這個病,所以拜託不要灌水或黑我。」

「就像患有癲癇的人一樣,我無法控制自己入睡的意願,也不能控制發作,謝謝你的理解。」

你可以看到,Sarah在影片中經常會出現虛脫,並且陷入睡意襲來、掙扎、睡著、醒來、再度睡著、再度醒來,最後陷入混亂。

睡著的情況不定,有時是瞌睡的程度,有時卻會睡到幾十分鐘,而他雖然用意志力與之對抗,卻沒有效果。

很難想像Sarah到底鼓起了多大的勇氣,才將自己平日的生活公諸於眾,也很難想像他從小到大忍受了多少閒言閒語。

如果你身邊也有是睡症的朋友,請多給予他一些關心和體諒,在他猝倒之際,扶他一把。

http://www.ettoday.net/dalemon/post/5594

What Narcolepsy Really Looks Like. Spoiler Alert- It Sucks.
Sleepy Sarah Elizabeth 

觀看次數:5,366,56
發佈日期:2014年7月7日

I have narcolepsy with cataplexy, and it can be very frustrating to try to explain what it's like to people who have never seen narcolepsy in real life, and how much of a struggle it can be. Most people think that it's funny until they see what actually happens, or they are completely unprepared and get really scared and panic.

I filmed this by accident, and it was really weird to go back and watch later from an outside perspective. I am posting this video as a way to help educate people, so please no trolling. Just like people with epilepsy, I can't control having a sleep attack or cataplexy any more than they can control having a seizure. Thank you for your understanding.

And in case you were wondering what I kept looking at, I had the choreography written out next to the camera so that I wouldn't lose my place in the dance. Soran Bushi Japanese Fisherman's Dance Music from the Bleach Soundtrack- Nothing Can Be Explained by Mike Wyzgowski. I don't own it and claim no rights to the song.

For the next video in the series, click here:http://youtu.be/oXQvI4resm4

https://youtu.be/1PuvXpv0yDM

沒有留言:

發佈留言