漫步罕見疾病畫展 / A Stroll Through a Rare Disease Art Exhibition

大部份的人都想要一個快樂穩定的生活，有份穩定的工作，有個溫暖的小屋，有個幸福的家庭，不過人生總是起起落落，難免會遇到一些挫折，但是，至少我們還有健康的身體，有一群人，也和我們生活在同樣的社會中，卻可能從出生起便需面對複雜的醫療需求、長期的復健以及身體上的痛苦，心理上更承受著被異樣眼光看待的壓力，他們就是罕見疾病患者。

罕見疾病是指每一萬人中少於一人罹患的疾病，這些疾病的名字可能很陌生，大部份的人幾乎沒機會知道，但對病友家庭而言，卻是一輩子的考驗，普瑞德威利症候群，俗稱小胖威利症，是一種因染色體現缺陷所導致的疾病，患者常伴隨有食慾控制困難、肌肉張力低下、智力發展遲緩等問題，他們終其一生都要經歷許多與「吃」有關的痛苦掙扎。

這場我偶爾進入的公益畫展，我是第一次聽到小胖威利症，我想，除了患者的親友，大部份的正常人，應該不會了解這些罕見疾病，然而，透過在場的協會導覽人員的解說，我也稍稍了解小胖威利症，有了很粗淺的了解，患者的作品，當然藝術價值不高，大多是簡單的線條，鮮豔的顏色，童趣的構圖，但是每幅作品，都是他們嘔心瀝血所傳達出來的感謝，感謝父母對他們的不離不棄，感謝社會對他們的包容，感謝上天給他們活在世界上的機會。

展場也有播放他們作畫過程的影片。有的患者手部動作不協調，畫一條直線都要試好幾次，但他們仍耐心地畫、努力地完成，觀展期間，我也開始反思，自己是否也曾因為一些不開心的小事而抱怨生活，卻忽略了生命中那些其實很珍貴的日常，導覽人員提到，會有這場公益畫展，也是一種社會教育，希望讓更多人理解罕見疾病的真實樣貌，進而建立起一個更具包容力的社會。

Most people long for a happy and stable life, like a steady job, a warm little home, and a loving family. But life is full of ups and downs, and it’s inevitable that we’ll face setbacks. Still, at least we have our health. There’s a group of people living in the same society as we do, who may have had to face complex medical needs, long-term rehabilitation, and physical pain from the moment they were born. On top of that, they often bear the emotional burden of being seen as “different.” These are patients with rare diseases.

A rare disease is defined as one that affects fewer than one person in ten thousand. The names of these conditions may sound unfamiliar, and most people never get a chance to hear about them. But for the families of those affected, it’s a lifelong challenge. One such disease is Prader-Willi Syndrome, often nicknamed “Little Fatty Willie” Syndrome in Chinese. It’s caused by a genetic defect on a chromosome and often leads to uncontrollable appetite, low muscle tone, and delayed cognitive development. These individuals spend their lives struggling with issues related to food.

I happened to walk into a public charity art exhibition where I heard about Prader-Willi Syndrome for the very first time. I imagine most people, unless they have a personal connection, probably aren’t familiar with rare diseases like this one. But thanks to the guided tour provided by the association at the event, I learned a little more.

The artworks on display, while not high in artistic value, were full of vibrant colors, simple lines, and childlike imagination. But more importantly, each piece was a heartfelt expression of gratitude, from the children to their parents for never giving up on them, to society for accepting them, and even to life itself for giving them the chance to exist in this world.

The exhibition also included videos showing the children creating their art. Some had trouble controlling their hands and needed multiple tries just to draw a straight line. Yet they were so patient and persistent. Watching this made me reflect on myself. Have I ever complained about little frustrations in life, while overlooking the preciousness of everyday moments?

The tour guide explained that this art exhibition was also meant to serve as a form of public education—to help more people understand what rare diseases really are, and to encourage a more inclusive and compassionate society.

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