美國明尼蘇達29歲女子喬安娜(Johanna Watkins)因罹患罕見免疫失衡疾病,過去一整年不得不關在房間裏,遠離陽光、病菌,甚至是她的丈夫。
![Pictured during simpler times before Johanna's condition meant she could not leave her room](http://teepr.com/wp-content/uploads/2016/11/582eb87190ced.jpg)
喬安娜原本是一位喜愛登山、健走、去海邊的活潑女子,經常與新婚丈夫史考特(Scott)到處上山下海。
![Until recently, the couple (pictured in 2012) had been active, and said that one of their favorite activities was hiking](http://teepr.com/wp-content/uploads/2016/11/582eb872c2eb0.jpg)
然而結婚不久後,她便被診斷出罹患巨噬細胞活化症候群(MCAS),一種人體免疫調節障礙或免疫失衡的疾病。由於喬安娜無法照射陽光,對於味道也十分敏感,因此平常多半待在房間裏,丈夫得去鄰居家煮飯再帶回家給喬安娜。
![Johanna Watkins, 29, (pictured with her husband Scott) sufferers from a severe immunological condition called cell activation syndrome (MCAS)](http://teepr.com/wp-content/uploads/2016/11/582eb873ca833.jpg)
為了避免誘發過敏,她不只不能太常與丈夫接觸,也被迫遠離人群。史考特:「我不能跟她靠得太近,也無法抱她,無法再不危害她健康的情況下抱抱她。」
![Despite multiple hospital visits and treatments, doctors are still working to find a way of treating Johanna's severe condition](http://teepr.com/wp-content/uploads/2016/11/582eb8746a483.jpg)
雖然兩人住一起,但他們必須分房睡,喬安娜睡在主臥室,史考特只能待在客房。平時吃飯時,史考特會將食物送到房門前,喬安娜再打開門領取。過去一整年,他們雖然同在一間屋簷下,但只能仰賴視訊軟體Skype溝通聯繫。
![Now the only way that Johanna can communicate with her loved ones is from her room via Skype](http://teepr.com/wp-content/uploads/2016/11/582eb875525ea.jpg)
至今,喬安娜只有一次因為緊急送醫才離開臥室。當時兩人都必須戴上口罩,且喬安娜全身包得緊緊的才能接觸。史考特進入房間後,將喬安娜抱到車上,開往醫院。然而回家後,喬安娜開始感到全身不舒服。
![The only time Johanna leaves the room is for emergency room visits and scheduled doctor . By time time they arrive home, Johanna is exhausted and in pain.](http://teepr.com/wp-content/uploads/2016/11/582eb87625917.jpg)
「當門被打開時,我的喉嚨瞬間變得又乾又緊。我能感覺到體內細胞進入攻擊狀態。那種感覺就像是我的身體不斷在備戰狀態,發起戰爭。」
「我房間的窗戶被蓋上厚厚的幕簾,因為我對陽光也會過敏。我真的很懷念以前的時光,特別是秋天的時候,那是我最愛的季節。我想念陽光、樹木,想念在變色的葉子下散步。」
![The rest of the time, Johanna is confined to her bedroom were all natural sunlight has to be blocked out](http://teepr.com/wp-content/uploads/2016/11/582eb876de325.jpg)
「最痛苦的是,偶爾我會拉開窗簾,看看窗外的世界,但接下來我又必須回到一個人的世界。」
雖然日子艱難,不過幸好,史考特及喬安娜還有隔壁鄰居丹與露西的協助。史考特、喬安娜與鄰居一家六口一起住,為了喬安娜的身體,他們會去其他鄰居家開伙,在戶外野餐桌吃飯,或外食。
![Even though Scott is just downstairs, every time he opens the door or touches his wife, causes her pain](http://teepr.com/wp-content/uploads/2016/11/582eb87782041.jpg)
由於喬安娜對大部分食物過敏,她每天只能少量多餐,吃一樣的東西:烤羊腿、燉牛肉、小黃瓜及胡蘿蔔。而她唯一能喝的飲料只有水。
目前,明尼蘇達大學醫療團隊正努力找出對抗病症的解藥,史考特及喬安娜也希望不久後,他們能搬到自己的家,在不誘發過敏又能安全相處的情況下過生活。他們已在募資平台網站上募得超過10萬美金(約320萬新台幣)。
![The couple, who have only been married for three years, are hoping to move into their own home which will have a specially adapted safe space for Johanna](http://teepr.com/wp-content/uploads/2016/11/582eb8783d6bd.jpg)
史考特說,「雖然我可以抱怨,我也不想要這種事發生在我們身上,老實說,有好幾次我們真的很絕望,但這就是我們所面臨的生活。而身邊有一群對我們如此好的親友,實在無法要求更多了。」
來源:DailyMail
希望喬安娜可以快快找到解藥治好!
(往下還有更多精彩文章!)