0:00:05.415,0:00:06.858
大家好

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多謝

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[ Jennifer Brea 對聲音敏感

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現場觀眾用美式手語歡迎 ]

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呢個係五年前嘅我

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當時我係哈佛嘅博士生

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鍾意旅行

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啱啱同我生命中最愛嘅人訂婚

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嗰陣我28歲，同大部份人一樣

0:00:31.071,0:00:33.102
覺得自己好健康、百毒不侵

0:00:34.477,0:00:38.147
有一日，我發燒燒到華氏 104.7 度

0:00:38.758,0:00:40.807
其實我應該要去睇醫生

0:00:40.831,0:00:43.395
不過，我一生中未患過病

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而且我知，一般如果你受病毒感染

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你留喺屋企，煲啲雞湯

0:00:48.953,0:00:51.266
幾日之內就會好返

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但係，呢次無好返

0:00:55.560,0:00:57.097
發燒之後

0:00:57.121,0:01:00.972
三個星期都頭暈，無辦法出門口

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我行路會撞落門框度

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我要扶住墻先可以行去浴室

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嗰年春天，我病完又病

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每一次我去睇醫生

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佢都話絕對無問題

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佢手上嘅化驗報告

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都話我好正常

0:01:21.875,0:01:23.842
我所有嘅癥狀

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我都可以形容

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但無人睇到

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我知聽起嚟好傻

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但係你點都會搵個原因畀自己

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我以為可能係老化

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或者呢個就係年過 25 嘅情況

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（笑聲）

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跟住，神經癥狀開始出現

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有時，我發現我畫唔到圓形嘅右邊

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有時我會講唔到嘢，甚至郁唔到

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我睇過所有專科

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傳染病科、皮膚科、內分泌科、心臟科

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我甚至睇埋精神科

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精神科醫生話︰「你好明顯病咗，

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但同精神科無關。

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我希望其他醫生搵到係咩事。」

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第二日，神經科醫生診斷出[br]我患咗轉化症

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佢話所有癥狀——

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發燒、喉嚨痛、鼻竇炎

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所有腸胃、神經同心臟癥狀——

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都因為某啲我唔記得嘅情緒創傷引起

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佢話啲病癥都係真嘅

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但都冇生理原因解釋

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我曾經受訓做社會科學家

0:02:47.160,0:02:50.392
我讀過統計學、概率論

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數學模型、實驗設計

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雖然我唔可以否定神經科醫生嘅診斷

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但我又覺得醫生嘅診斷唔係真嘅

0:03:01.215,0:03:04.685
但知識話畀我聽事實多數違反直覺

0:03:05.356,0:03:07.953
事實好容易被自己想相信嘅嘢矇蔽

0:03:08.514,0:03:11.446
所以我諗可能佢係啱嘅

0:03:13.603,0:03:16.118
嗰日，我做咗個小實驗

0:03:16.919,0:03:20.332
我喺診所行咗兩英里返屋企

0:03:21.229,0:03:25.264
我對腳有種好奇怪、好似觸電嘅痛

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沿途，我仔細咁諗

0:03:28.102,0:03:32.121
我嘅心理點樣令呢一切發生

0:03:33.320,0:03:35.195
當我行入門口

0:03:35.219,0:03:36.384
我跌低咗

0:03:36.837,0:03:39.619
個腦同脊髓好似火燒咁

0:03:40.696,0:03:44.467
條頸僵硬到下巴掂唔到胸口

0:03:45.324,0:03:47.075
同埋，無論幾細嘅聲都好——

0:03:47.099,0:03:48.934
就算床單摩擦

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老公赤腳喺隔離房行嘅聲音——

0:03:51.737,0:03:53.871
都會令我有難以忍受嘅痛楚

0:03:55.832,0:03:58.415
跟住兩年嘅大部分時間[br]我都喺床上度過

0:03:59.235,0:04:01.995
點解我嘅醫生會錯得咁離譜？

0:04:02.939,0:04:05.120
我覺得我患咗一種罕見嘅病

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連醫生都未見過嘅病

0:04:07.926,0:04:09.121
之後我上網

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搵到嚟自世界各地成千上萬嘅人

0:04:11.980,0:04:13.830
原來都有同樣嘅癥狀

0:04:14.087,0:04:15.651
同樣需要隔離

0:04:15.675,0:04:17.132
同樣覺得難以置信

0:04:17.854,0:04:19.137
有啲人仲可以工作

0:04:19.161,0:04:21.646
但夜晚同周未都一定要留喺床上

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只係為咗下星期一可以返工

0:04:24.364,0:04:26.444
至於其他人

0:04:26.468,0:04:28.206
有啲病得好嚴重

0:04:28.230,0:04:30.536
要喺完全黑暗嘅環境下生活

0:04:30.560,0:04:33.932
無辦法忍受人聲

0:04:33.956,0:04:35.865
或者伴侶嘅觸摸

0:04:37.469,0:04:41.471
我被診斷患上肌痛性腦脊髓炎

0:04:42.554,0:04:46.006
即係你可能聽過嘅「慢性疲勞症候群」

0:04:46.987,0:04:47.979
幾十年嚟

0:04:48.023,0:04:56.278
呢個名就代表住[br]一種可以嚴重成咁嘅疾病

0:04:57.468,0:04:58.992
一樣我哋都有共同病徵就係

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當我哋耗盡全力，無論體力上定精神上

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就要付出代價，好大代價

0:05:05.807,0:05:07.255
就好似如果我老公去跑步

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佢可能會喉嚨痛幾日

0:05:09.325,0:05:11.165
或者如果我行過半個街口

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大概就要瞓喺床度一個星期一樣

0:05:13.323,0:05:16.118
呢個可以話係完美嘅軟禁

0:05:16.261,0:05:19.009
我識得跳唔到舞嘅芭蕾舞家

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計唔到數嘅會計師

0:05:21.230,0:05:23.788
永遠都做唔成醫生嘅醫科生

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你曾經係咩唔重要

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因為你都無辦法繼續做

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過咗四年

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我仲未恢復到當日[br]由診所行返屋企前咁健康

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據估計，全球大概有 [br]1,500 到 3,000 萬人患咗呢種病

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喺我嘅國家，美國[br]就有一百萬人患咗呢種病

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大約係患上多發性硬化嘅兩倍

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病人可以生存到幾十年

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但佢哋嘅活動能力就好似

0:05:54.823,0:05:56.920
患咗充血性心力衰竭咁

0:05:56.920,0:06:00.927
有 25% 嘅病人要留喺屋企或者喺床上

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75% 至 85% 甚至唔可以做兼職

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事實上，醫生唔會醫我哋

0:06:08.064,0:06:10.002
科學家唔會研究我哋

0:06:11.116,0:06:16.904
點解呢種咁普遍同埋慘嘅病[br]會被醫學界遺忘？

0:06:19.264,0:06:21.788
當我嘅醫生診斷出我患咗轉化症

0:06:21.812,0:06:22.934
佢指向緊

0:06:22.934,0:06:26.674
一啲有 2,500 年歷史[br]有關女性身體嘅諗法

0:06:27.215,0:06:28.948
古羅馬醫生蓋倫認為

0:06:28.972,0:06:34.383
歇斯底里症嘅成因係性渴求[br]尤其係熱情嘅女性

0:06:35.143,0:06:37.889
蓋倫認為子宮會變乾

0:06:37.913,0:06:40.080
並且喺身體遊走搵水份

0:06:40.104,0:06:42.260
擠壓內臟——

0:06:42.284,0:06:43.498
無錯——

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引致極端情緒

0:06:47.367,0:06:49.612
甚至頭暈同癱瘓

0:06:50.715,0:06:53.319
當時嘅療法係結婚同生仔

0:06:54.898,0:06:59.458
呢種諗法維持到 1880 年代

0:06:59.482,0:07:03.774
當時嘅神經病學家[br]嘗試更新歇斯底里症嘅理論

0:07:03.774,0:07:05.417
佛洛伊德發展咗一個理論

0:07:05.441,0:07:10.207
佢話︰當明意識處理唔到[br]一啲太痛苦嘅記憶或者情緒

0:07:10.220,0:07:12.611
潛意識就會產生生理徵狀

0:07:12.635,0:07:15.514
將情緒轉化為生理徵狀

0:07:17.460,0:07:19.656
即係，依架男性都會患歇斯底里症

0:07:19.680,0:07:22.178
但當然女性比較容易受影響

0:07:23.448,0:07:27.065
當我開始睇返我呢個病嘅歷史

0:07:27.089,0:07:30.134
我好驚訝呢啲舊諗法仍然深入民心

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1934 年喺洛杉磯縣綜合醫院

0:07:33.647,0:07:38.586
198 個醫生、護士同醫院員工[br]病得好嚴重

0:07:38.586,0:07:42.996
佢哋肌肉衰弱，頸同背脊僵硬，又發燒

0:07:43.020,0:07:46.374
同我當初病一樣

0:07:46.928,0:07:49.247
醫生以為係變種嘅小兒麻痹症

0:07:50.133,0:07:51.728
自從嗰次之後

0:07:51.778,0:07:56.819
全球錄得超過 70 次[br]好相似嘅後感染性疾病個案

0:07:57.419,0:08:00.912
所有爆發傾向影響女性

0:08:01.482,0:08:05.409
當時醫生搵唔到病因

0:08:05.433,0:08:08.572
於是認為係大規模嘅歇斯底里症爆發

0:08:09.115,0:08:12.020
點解呢個諗法可以保持咁耐？

0:08:13.567,0:08:15.363
我真係覺得同性別歧視有關

0:08:15.387,0:08:18.828
但係我諗醫生係想幫手

0:08:18.852,0:08:20.622
佢哋想知答案

0:08:20.646,0:08:25.537
但呢個講法至少可以畀醫生醫人

0:08:25.561,0:08:28.366
畀醫生去解釋一啲解釋唔到嘅疾病

0:08:29.079,0:08:31.771
問題係，咁樣會帶嚟真正嘅傷害

0:08:32.382,0:08:35.978
1950 年代[br]一個叫 Eliot Slater 嘅精神科醫生

0:08:36.002,0:08:40.776
研究咗 85 個[br]被診斷出患上歇斯底里症嘅病人

0:08:40.776,0:08:44.763
9 年之後，12 個死咗，30 個殘障

0:08:44.787,0:08:46.767
好多人有診斷唔到嘅病

0:08:46.784,0:08:50.140
好似多發性硬化、癲癇、腦腫瘤

0:08:51.259,0:08:52.563
喺 1980 年

0:08:52.563,0:08:55.563
歇斯底里症正式改名為「轉化症」

0:08:55.563,0:08:58.887
神經科醫生喺 2012 年幫我診症嘅時候

0:08:58.911,0:09:01.528
佢完全跟隨緊佛洛伊德嘅說話

0:09:01.552,0:09:02.703
今時今日

0:09:02.727,0:09:07.101
女性被診斷呢個病嘅機會[br]比男性多 2-10 倍

0:09:08.487,0:09:14.576
問題係歇斯底里理論或者心理病理論[br]係永遠無辦法證實

0:09:14.576,0:09:17.423
個理論本身係無證據

0:09:18.192,0:09:19.567
以肌痛性腦脊髓炎為例，你會發現

0:09:19.591,0:09:23.596
心理學嘅解釋窒礙生物學嘅研究

0:09:23.620,0:09:27.309
喺全球，肌痛性腦脊髓炎[br]係其中一個研究資助最少嘅病

0:09:27.321,0:09:31.809
喺美國，每年喺每個愛滋病人身上

0:09:31.809,0:09:34.809
用咗大概 2,500 美金

0:09:34.809,0:09:37.639
多發性硬化症病人就 250 美金

0:09:38.100,0:09:41.717
而肌痛性腦脊髓炎病人就只用 5 美金

0:09:42.125,0:09:44.206
呢件事唔係突然間嚟

0:09:44.230,0:09:45.994
我唔只係唔好彩

0:09:46.494,0:09:49.585
無視我呢個病係一個決定

0:09:49.609,0:09:53.733
係由應該要保護我哋嘅機構[br]做嘅一個決定

0:09:55.535,0:09:58.445
我哋唔知點解有時肌痛性腦脊髓炎[br]喺家族入面發生

0:09:58.445,0:10:00.895
唔知點解你幾乎每次感染

0:10:00.919,0:10:03.093
腸道病毒、人類疱疹病毒第四型[br]以至到 Q 型流感嘅時候

0:10:03.093,0:10:05.123
肌痛性腦脊髓炎就會病發

0:10:05.123,0:10:08.363
又或者點解佢影響女性[br]比男性多兩至三倍

0:10:09.058,0:10:11.777
呢啲嘢比我嘅病重要得多

0:10:12.356,0:10:13.539
當初我病嘅時候

0:10:13.563,0:10:15.721
舊朋友都有樂意幫我

0:10:16.180,0:10:19.320
之後我發覺自己[br]同一班就嚟 30 歲嘅女士一樣

0:10:19.320,0:10:20.843
身體面臨崩潰

0:10:22.012,0:10:24.541
最得人驚嘅係到底我哋面對緊嘅麻煩

0:10:24.541,0:10:26.049
有幾多係被認真咁對待

0:10:26.577,0:10:30.675
我知道有個女士[br]患咗一種自身免疫結締組織病

0:10:30.683,0:10:33.393
好多年都係話問題喺佢個頭度

0:10:33.417,0:10:35.929
由發病到診斷

0:10:35.953,0:10:38.380
佢條食道完完全全被破壞

0:10:38.404,0:10:40.649
佢無辦法再食嘢

0:10:40.673,0:10:43.335
另一個患咗卵巢癌嘅女士

0:10:43.335,0:10:46.124
好多年都係話佢只係提早咗更年期

0:10:47.188,0:10:48.756
我有一個大學朋友

0:10:48.780,0:10:52.675
佢腦腫瘤曾經被誤診為焦慮症

0:10:54.222,0:10:55.832
呢個就係令我擔心嘅原因︰

0:10:57.125,0:10:58.846
自從 1950 年代開始

0:10:58.846,0:11:02.303
患自身免疫病嘅比例增加三倍

0:11:02.818,0:11:07.778
45% 最後確診患咗[br]一種已知嘅自身免疫病嘅人

0:11:07.800,0:11:10.308
初時被診斷患咗軟骨炎

0:11:10.783,0:11:13.727
就好似以前嘅歇斯底里症咁

0:11:13.727,0:11:16.253
所有診斷都同性別拉上關係

0:11:16.974,0:11:20.625
75% 嘅自身免疫病嘅病人都係女性

0:11:20.649,0:11:23.828
某啲疾病甚至 90% 都係女性

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就算女性係容易患上呢啲病

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呢啲都唔係女性專有嘅病

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肌痛性脊髓炎出現喺小朋友

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亦出現喺過百萬男性身上

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正如某個病人同我講

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我哋畀呢個病侵擾我哋……

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如果你係女性，人哋就話你誇大癥狀

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但如果你係男性[br]人哋就叫你堅強、振作

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男性甚至更難診斷

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雖然我嘅頭腦唔似以前咁

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但無論點

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我仲抱有希望

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有好多病一開始都被認為係精神方面嘅

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直至科學發現佢哋嘅生物機制

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喺腦電圖測到大腦異常活動之前

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癲癇病人可能被強制送入精神病院

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喺斷層掃描同磁力共振發現腦病變之前

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多發性硬化有可能誤診為[br]歇斯底里性麻痺

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以前，我哋認為胃潰瘍[br]只係因為壓力而形成

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到依架我哋發現[br]幽門螺旋菌先係罪魁禍首

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肌痛性腦脊髓炎從未好似其他病咁[br]得到科學嘅幫助

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但係呢個情況已經開始改變

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喺德國，科學家開始[br]搵自身免疫病嘅證據

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日本搵緊腦炎症嘅證據

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喺美國，史丹福科學家喺度搵緊

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能量代謝達16 個標準差嘅異常情況

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喺挪威，研究人員

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為一種喺某啲病人身上[br]可以完全緩解癌症嘅藥

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進行緊第三階段嘅臨床實驗

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仲畀到希望我嘅就係病人嘅韌力

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我哋透過網絡走埋一齊

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分享自己嘅故事

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我哋讀晒現有嘅研究

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我哋用自己嚟做實驗

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我哋要成為自己嘅科學家同醫生

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我哋一定要咁做

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我慢慢咁喺呢度加 5%，嗰度加 5%

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直到有一日，我可以行出屋企

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我仍然要做一啲荒謬嘅訣擇︰

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我今日坐係花園 15 分鐘，定係洗頭好？

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但係我仍然相信我可以好返

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我除咗有一個病咗嘅身體，咩都好好

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得到正確嘅幫助，或者有一日我會好返

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我同世界各地嘅病人一齊對抗呢個病

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我哋將美好嘅事物填滿空虛

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但咁係唔夠

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我仍然唔知我仲可唔可以跑、行路

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依架呢啲嘢只可以喺夢度做

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但係嚟到呢度我都好感恩

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進展係慢

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有時好

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有時壞

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但係每一日都好一啲

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我記得匿埋係睡房好幾個月[br]不見天日嘅感覺

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我以為我會死喺嗰度

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但係我今日喺呢度，同你哋一齊

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呢個就係奇蹟

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如果我唔係幸運嘅一群

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如果我喺互聯網出現之前病

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如果我搵唔到同病相憐嘅人

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我唔知我會點

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大概我會好似好多其他人咁已經自殺

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如果我哋幾十年前問啱問題

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可以救返幾多人？

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如果今日我哋真真正正開始

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又可以救返幾多人？

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如果我哋唔改變我哋嘅體制同文化

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就算搵到我個病嘅真正原因

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我哋都會喺其他病重蹈覆轍

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呢個病教識咗我[br]科學同醫學都深受人類追求嘅

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醫生、科學家同政策制訂者[br]都會受到同樣嘅偏見影響

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進而影響我哋

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我哋要喺微細之處諗諗女性嘅健康

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我哋嘅免疫系統同身體其他部分一樣[br]需要顧及

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我哋要聽病人嘅故事

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亦要肯講「我唔知」

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「我唔知」係一件美好嘅事

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「我唔知」先會有探索

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如果我哋做到「我唔知」

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如果我哋可以接觸眾多嘅未知

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而唔係怕當中嘅不確定性

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我哋或者可以讚歎地欣賞其中

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多謝

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多謝