TEDMED 2016
Sharon Terry: Science didn't understand my kids' rare disease until I decided to study it
莎朗 · 泰利: 科学界不了解我孩子的罕见疾病，直到我决定去研究它
Filmed:
Readability: 4.2
1,352,657 views
莎朗 · 泰利，一位前大学牧师兼留家庭主妇，当她的两个孩子被诊断患有假性黄斑假单胞菌（PXE）的罕见疾病时，她做起了医学研究。 在这次吸引人的演讲中，特里解释了她和她的丈夫是如何成为公民科学家的，分享了他们找到PXE背后的基因而在实验室工作到午夜的故事，并呼吁研究人员要分享生物样本并共同合作。
Sharon Terry - Citizen biomedical researcher
Sharon Terry is developing ways for ordinary people to transform biomedical research and healthcare. Full bio
Sharon Terry is developing ways for ordinary people to transform biomedical research and healthcare. Full bio
Double-click the English transcript below to play the video.
00:12
The best Christmas my children ever had
0
440
3136
我的孩子们过的最好的圣诞节
00:15
was also the worst Christmas
my husband and I ever had.
my husband and I ever had.
1
3600
3320
却也是我丈夫和我过的最差的
圣诞节。
圣诞节。
00:19
Elizabeth, age seven,
2
7800
1816
7岁的伊丽莎白和
00:21
and her brother, Ian, age five,
3
9640
2856
她5岁的弟弟伊恩
00:24
couldn't imagine why they were getting
everything they wanted for Christmas.
everything they wanted for Christmas.
4
12520
3719
想不出为什么他们那年圣诞节得到了
所有想要的圣诞礼物。
所有想要的圣诞礼物。
00:29
The reason Santa was so generous
5
17240
2720
那一年圣诞老人如此慷慨是因为
00:32
was because of something
my husband Pat and I knew
my husband Pat and I knew
6
20760
3256
我丈夫帕特和我知道了一些事情，
00:36
and the kids couldn't comprehend.
7
24040
1840
孩子们当时并不能理解的事情。
00:38
Something that we had just learned,
and it terrified us.
and it terrified us.
8
26440
3160
这事情我们刚弄清楚就吓坏了我们。
00:43
This was 1994
9
31560
2256
这发生在1994年，
00:45
and the story actually starts
a few years earlier.
a few years earlier.
10
33840
2360
事实上故事要从更早的几年说起。
00:48
For a couple of years I had noticed
a rash on the sides of Elizabeth's neck
a rash on the sides of Elizabeth's neck
11
36800
4800
那几年，
我注意到伊丽莎白脖子边上的皮疹，
我注意到伊丽莎白脖子边上的皮疹，
00:54
that looked like prickly heat.
12
42400
1480
看起来像是痱子。
00:56
For those same years,
my father and brother both died of cancer,
my father and brother both died of cancer,
13
44960
3880
在相同的几年间，
我的父亲和兄弟都死于癌症。
我的父亲和兄弟都死于癌症。
01:01
and I was probably
overanxious about illness.
overanxious about illness.
14
49600
2680
因此我对疾病过度焦虑。
01:05
The doctors assured us
there was nothing wrong
there was nothing wrong
15
53120
2776
医生向我们保证这不会有问题，
01:07
and I shouldn't worry,
16
55920
1736
并且告诉我不必担心，
01:09
but I wasn't so sure.
17
57680
1400
但我还是不太相信。
01:12
And so without a referral,
and paying out-of-pocket,
and paying out-of-pocket,
18
60200
3096
所以在没有转诊且缴了费的情况下，
01:15
I took Elizabeth to a dermatologist.
19
63320
2199
我带着伊丽莎白来看皮肤科的专家。
01:18
She was probably
just allergic to something,
just allergic to something,
20
66560
2336
她可能只是对一些东西过敏
01:20
but why did it appear
just on the sides of her neck, this rash?
just on the sides of her neck, this rash?
21
68920
4400
但是为什么皮疹只出现
在她脖子两侧？
在她脖子两侧？
01:26
So it's two days before Christmas,
22
74840
1936
1994年，
在圣诞节的前两天，
01:28
1994,
23
76800
1200
01:31
and the dermatologist
takes a quick look at her neck and says,
takes a quick look at her neck and says,
24
79200
3376
皮肤科专家看了一眼她的脖子便说道：
01:34
"She has pseudoxanthoma elasticum."
25
82600
2040
“她患有弹性纤维性假黄瘤。”
01:37
And then he shuts off the lights
and looks in her eyes.
and looks in her eyes.
26
85640
3600
接着医生关了灯并看她的眼睛。
01:42
It turns out, by chance,
27
90320
1656
原来，碰巧地，
01:44
this dermatologist
also trained in ophthalmology.
also trained in ophthalmology.
28
92000
3120
这位皮肤科专家曾学过眼科学，
01:48
Our lucky day.
29
96080
1200
这真是我们的幸运日。
01:51
I am sick to my stomach.
30
99400
1760
我的胃里开始感到不适，
01:53
"Oma?"
31
101640
1256
“瘤？”
01:54
Oma's like melanoma, lymphoma --
32
102920
2896
就像黑色素瘤和淋巴瘤——
那样的癌症吗？
01:57
cancer.
33
105840
1200
01:59
"Why are you looking
in her eyes for a skin rash?"
in her eyes for a skin rash?"
34
107840
3736
“为什么她皮肤有皮疹，
你却要看着她的眼睛？”
你却要看着她的眼睛？”
02:03
I scream and make no sound.
35
111600
2080
我心中无声地呐喊道。
02:06
So there it is.
36
114720
1200
就这样，
02:08
Elizabeth has pseudoxanthoma elasticum,
37
116800
3560
伊丽莎白患的是弹性纤维性假黄瘤，
02:13
PXE for short.
38
121440
1560
简称PXE。
02:16
Questions mix with fear
39
124880
2296
我心中充满疑惑和恐惧，
02:19
and erupt like bile in my throat.
40
127200
2200
喉咙像是有胆汁要迸出来。
02:21
Why are you looking in her eyes?
41
129919
1721
为什么你一直看着她的眼睛？
02:24
What do you know about this?
How do you know for sure?
How do you know for sure?
42
132840
2976
你对此了解吗？
你怎么那么确定？
你怎么那么确定？
02:27
What is the prognosis?
43
135840
1480
预后又是什么？
02:30
My training in pastoral counseling
did not prepare me for this.
did not prepare me for this.
44
138200
3720
我在田园辅导时可没有学到这个。
02:35
Dr. Bercovitch tells us
everything he knows about PXE.
everything he knows about PXE.
45
143680
3880
伯科维奇医生告诉我们
他对PXE所知道的一切。
他对PXE所知道的一切。
02:40
It's a rare genetic disorder,
46
148840
1760
这是一种罕见的遗传疾病，
它具有系统性，
02:43
it's systemic,
47
151800
1200
02:46
it's a slowly progressing,
premature aging disease.
premature aging disease.
48
154040
3920
它是种病程缓慢的早衰症，
02:50
It causes loose wrinkly skin
in the flexor areas.
in the flexor areas.
49
158840
3560
它会使屈肌区的皮肤松弛，
02:55
It causes legal blindness,
50
163600
1936
还会导致失明，
02:57
like macular degeneration,
51
165560
1720
就像黄斑变性一样，
02:59
and a host of cardiovascular problems.
52
167960
2720
并能引起很多心血管问题。
03:03
Little is known about this disease,
53
171680
2080
我们对该种疾病知之甚少，
03:06
and some people die in their 30s,
54
174600
2816
当时有些报道称
03:09
say some of the reports at the time.
55
177440
2480
有些患者在他们30岁左右时就死了。
03:13
He then just glances at our son and says,
56
181440
2800
然后他瞥了我们的儿子一眼说道：
03:18
"He has it, too."
57
186120
1200
“他也有这种疾病。”
03:21
We want to flee
back to the land of normal.
back to the land of normal.
58
189400
4840
我们多么想回到普通的生活。
03:30
Two days after Christmas,
59
198920
1416
圣诞节后两天，
03:32
researchers come
from a university in Boston,
from a university in Boston,
60
200360
3016
一些来自波士顿大学的研究人员
03:35
and they take blood
from us and our children
from us and our children
61
203400
2496
为了一个关于寻找基因的研究项目
03:37
for a research project
focused on finding the gene.
focused on finding the gene.
62
205920
2640
他们从我们和孩子身上取走了血样。
03:41
A few days later,
63
209360
1376
几天后，
03:42
researchers come
from a medical center in New York
from a medical center in New York
64
210760
2416
来自纽约医疗中心的研究人员
也来说想要血样。
03:45
and say they want blood, too.
65
213200
1520
03:47
"These are children.
66
215520
1400
“这些是孩子啊，
03:49
They're five and seven years old.
67
217560
2096
他们都只有5,7岁大而已，
03:51
Don't make them face the needle twice.
68
219680
2000
请不要让他们面对针管两次，
03:54
Go and get your share
from the other researchers."
from the other researchers."
69
222360
3040
请你们离开，
让其他研究者与你们分享。”
让其他研究者与你们分享。”
03:58
They laugh, incredulous.
70
226440
2216
他们笑了并反问：
“分享？”
04:00
"Share?"
71
228680
1200
04:03
It is then that we learn that there
is little sharing in biomedical research.
is little sharing in biomedical research.
72
231200
4400
那之后我们才知道，
在生物医学研究领域很少有分享的行为。
在生物医学研究领域很少有分享的行为。
04:08
This moment, more than any other,
73
236520
2696
这一刻比任何时候都能
04:11
lit a fire beneath my husband Pat and me.
74
239240
2640
燃起我丈夫帕特和我心中的怒火。
04:15
Pat and I went to a medical school library
75
243640
2176
帕特和我去了一间医学图书馆，
04:17
and we copied every article
we could find on PXE.
we could find on PXE.
76
245840
2960
然后我们复印了
所有我们能找的关于PXE的资料。
所有我们能找的关于PXE的资料。
04:21
We didn't understand a thing.
77
249720
1960
我们完全看不懂。
04:24
We bought medical dictionaries
and scientific textbooks
and scientific textbooks
78
252840
2736
我们就买医学词典和科学教材，
然后阅读我们手中的一切。
04:27
and read everything
we could get our hands on.
we could get our hands on.
79
255600
2143
04:30
And though we still didn't understand,
80
258560
1856
我们仍然不能弄明白，
04:32
we could see patterns,
81
260440
1856
我们可以看图，
一个月后，我们就发现了
04:34
and it became quickly
apparent within a month
apparent within a month
82
262320
3376
04:37
that there was no systematic effort
to understand PXE.
to understand PXE.
83
265720
3960
PXE这个疾病缺乏系统性的研究。
04:43
In addition,
84
271000
1216
另外，
04:44
the lack of sharing
that we experienced was pervasive.
that we experienced was pervasive.
85
272240
3240
我们常常遇到缺少分享的情况。
04:48
Researchers competed with each other
86
276480
2280
研究人员互相竞争，
04:51
because the ecosystem
was designed to reward competition
was designed to reward competition
87
279640
4040
因为大环境是鼓励他们竞争
04:56
rather than to alleviate suffering.
88
284560
1960
而非缓解痛苦的。
04:59
We realized that we would have to do
work on this condition ourselves
work on this condition ourselves
89
287840
5016
我们认识到
我们得在这种环境下寻找解决方法，
我们得在这种环境下寻找解决方法，
05:04
to find solutions
for ourselves and others like us.
for ourselves and others like us.
90
292880
3520
不仅为了我们，
也为了像我们一样的其他人。
也为了像我们一样的其他人。
05:09
But we faced two major barriers.
91
297560
2336
但是我们遇到了两大难题。
05:11
The first one:
92
299920
1496
第一个是：
05:13
Pat and I have no science background.
93
301440
2360
帕特和我没有科学背景
05:16
At the time, he's the manager
of a construction company,
of a construction company,
94
304920
3416
当时，他是一家建筑公司的经理
05:20
and I'm a former college chaplain
stay-at-home mom --
stay-at-home mom --
95
308360
3856
而我以前是一位大学牧师兼家庭主妇——
05:24
hardly the backgrounds
to take the research world by storm.
to take the research world by storm.
96
312240
3640
这让我们很难快速进行科学研究。
05:29
The second barrier:
97
317480
1680
这第二个难题就是
05:32
researchers don't share.
98
320360
1480
研究人员不愿意分享。
05:35
People told us you can't herd cats.
99
323000
2520
人们告诉我们，
你不能让猫听你的话，
你不能让猫听你的话，
05:38
Well, yes you can if you move their food.
100
326640
3536
好吧，但其实你可以，
只要你拿走它们的食物。
只要你拿走它们的食物。
05:42
(Laughter)
101
330200
2040
（笑声）
05:45
(Applause)
102
333400
3560
（掌声）
05:49
DNA and clinical data is the food.
103
337400
3000
DNA和临床资料就是他们的食物，
05:52
So we would collect blood
and medical histories,
and medical histories,
104
340960
3136
所以我们收集了血样和医学史
05:56
and require that all scientists
using these resources
using these resources
105
344120
3576
并且要求所有用这些资源的科学家
05:59
would share results with each other
and with the people who donated.
and with the people who donated.
106
347720
3680
都能互相分享他们的成果
并分享给捐赠人。
并分享给捐赠人。
06:05
Well before the internet
was in common use,
was in common use,
107
353080
2216
在英特网还没广泛使用的时候，
06:07
Pat and I established PXE International,
108
355320
2856
帕特和我建立了“PXE国际组织”，
06:10
a nonprofit dedicated to initiating
research and conducting it on PXE
research and conducting it on PXE
109
358200
4896
它是一个致力于开展和引导PXE研究的
非营利组织，
非营利组织，
06:15
and also supporting
individuals with the disease.
individuals with the disease.
110
363120
3480
它还支援患有该疾病的人。
06:19
Using traditional media,
111
367840
1336
通过传统媒体，
06:21
we garnered around
100-150 people around the world
100-150 people around the world
112
369200
4416
我们收集了全球大约100到
150个人的资料。
150个人的资料。
06:25
who we asked,
113
373640
1256
他们会被我们问道：
06:26
would you give us your blood,
your tissue, your medical histories,
your tissue, your medical histories,
114
374920
3256
你愿意给我们你的血样、组织样本、
用药记录
用药记录
和病历吗？
06:30
your medical records?
115
378200
1200
06:32
And we brought all of that together.
116
380200
1840
然后我们就把这些收集到一起。
06:34
We quickly learned that this shared
resource was not going to be enough.
resource was not going to be enough.
117
382920
3960
我们很快认识到这种资源的分享
是远远不够的。
是远远不够的。
06:39
And so we decided we had
to do hardcore bench science --
to do hardcore bench science --
118
387920
5336
因此我们决定去实验桌做研究——
核心研究。
06:45
hardcore research.
119
393280
1360
06:47
So we borrowed bench space
at a lab at Harvard.
at a lab at Harvard.
120
395400
2320
所以我们在哈佛实验室里
借了一个工作台的空间。
借了一个工作台的空间。
06:50
A wonderful neighbor
came a couple times a week
came a couple times a week
121
398200
2776
有一个不错的邻居一周会来几次，
06:53
and sat with the kids from 8pm to 2am
122
401000
4056
这位邻居会陪孩子们
从晚上8点坐到凌晨2点。
从晚上8点坐到凌晨2点。
06:57
while Pat and I extracted DNA,
123
405080
2336
让帕特和我可以安心提取DNA，
使用并评估凝胶体
和寻找基因。
06:59
ran and scored gels
124
407440
1736
07:01
and searched for the gene.
125
409200
1280
07:03
Generous postdocs
tutored us as we went along.
tutored us as we went along.
126
411240
2480
一位热心的博士后指导我们。
07:06
Within a few years, we found the gene.
127
414640
2200
不过几年，我们就找到了基因。
07:09
We patented it so that
it would be freely available.
it would be freely available.
128
417360
3016
我们获得了专利
然后它可以被免费使用。
然后它可以被免费使用。
07:12
We created a diagnostic test.
129
420400
2056
我们创建了一个诊断测试，
07:14
We put together a research consortium.
130
422480
2160
我们组织了一个研究联盟。
07:17
We held research meetings
and opened a center of excellence.
and opened a center of excellence.
131
425600
3200
我们举办了研究会议
建立了技术中心。
建立了技术中心。
07:21
We found more than 4,000 people
around the world who had PXE,
around the world who had PXE,
132
429360
5376
我们发现在全球有超过4000人
患有PXE，
患有PXE，
07:26
and held patient meetings
133
434760
1936
我们还举行了一场病人交流会
07:28
and did clinical trials and studies.
134
436720
2560
并做了临床试验和研究。
07:32
Through all this,
135
440840
1496
经历所有这些事情的过程中，
我们一直很害怕。
07:34
we lived with fear.
136
442360
1280
07:37
Fear of the disease
breathing down our neck
breathing down our neck
137
445040
2800
当钟声滴答作响的时候
我们很害怕这疾病会
出现在我们的脖子上。
出现在我们的脖子上。
07:41
while the clock ticked.
138
449360
1320
07:43
Fear of researchers,
139
451280
2160
害怕那些研究者们，
07:46
so well credentialed and positioned
in a world made for them.
in a world made for them.
140
454200
3840
他们在这个世界上有着如此高的信誉和地位。
07:50
Fear that we were making
the wrong choices.
the wrong choices.
141
458920
2440
害怕我们正在做着错误的选择。
07:54
Fear that the naysayers were right
142
462440
2336
害怕那些反对者是对的，
07:56
and the cats would simply find a new food.
143
464800
3120
害怕猫还是能轻松找到食物。
08:00
But greater than all these fears
was our drive to make a difference
was our drive to make a difference
144
468800
3176
但是比这些害怕更重要的是
我们为了孩子们
我们为了孩子们
08:04
for our kids and for all those
we had met along the way.
we had met along the way.
145
472000
3000
和那些一路上遇到的人
所做出的努力。
所做出的努力。
08:08
And very quickly,
146
476280
1216
很快地，
我也意识到我们只是在研究一种疾病，
08:09
we also realized what we
were doing for one disease,
were doing for one disease,
147
477520
2736
08:12
we should do for all diseases.
148
480280
2120
我们应该研究所有的疾病。
08:16
We joined with, and I eventually led,
149
484200
1816
我们加入了并最终领导了
“基因联盟”——
08:18
Genetic Alliance --
150
486040
1216
08:19
a network of health advocacy,
151
487280
2296
一个拥护健康
08:21
patient advocacy,
152
489600
1216
拥护患者，
08:22
research and health organizations.
153
490840
1640
的卫生研究组织。
08:25
We built scalable
and extensible resources,
and extensible resources,
154
493160
2456
我们构建了可规模化和可拓展的资源，
08:27
like biobanks and registries
and directories of support
and directories of support
155
495640
2816
比如包括所有疾病的
生物信息库，注册信息和协助电话。
08:30
for all diseases.
156
498480
1320
08:32
And as I learned about all those diseases
and all those disease communities,
and all those disease communities,
157
500800
4056
我对所有这些疾病了解的越多，
对这些患病群体了解越多，
对这些患病群体了解越多，
08:36
I realized that there were
two secrets in health care
two secrets in health care
158
504880
2856
我就越来越意识到
在卫生保健领域有两个秘密，
在卫生保健领域有两个秘密，
08:39
that were impacting me greatly.
159
507760
1800
它们对我影响很大。
08:42
The first:
160
510480
1256
第一个就是
08:43
there are no ready answers
for people like my kids
for people like my kids
161
511760
3416
无论是对那些像我孩子一样的人
还是与我一起努力的人，
还是与我一起努力的人，
08:47
or all the people I was working with,
162
515200
1935
无论是普通还是罕见情况，
08:49
whether common or rare conditions.
163
517159
2041
都没有现成的答案。
08:51
And the second secret:
164
519919
1240
第二个秘密就是：
08:53
the answers lie in all of us together,
165
521760
4096
答案在我们每个人身上，
08:57
donating our data,
166
525880
1480
我们一起捐赠我们的数据，
09:00
our biological samples
167
528240
2296
生物样本，
09:02
and ultimately ourselves.
168
530560
1720
最后奉献我们自己。
09:06
There is a small
groundswell of individuals
groundswell of individuals
169
534440
3336
目前有人在带领这股风潮，
09:09
who are working to change this.
170
537800
2256
他们正致力于改变科学研究的方式。
09:12
Citizen scientists, activists, hacks
171
540080
3056
那些公民科学家、活动家和骇客们
09:15
who are using crowdsourcing,
do-it-yourself science
do-it-yourself science
172
543160
3176
正采用众包的方式，
做着自己的科学
做着自己的科学
09:18
are changing the game.
173
546360
1200
正在改变这个游戏。
09:20
Even President Obama
and Vice President Biden
and Vice President Biden
174
548600
2920
连总统奥巴马亦或是
副总统拜登
副总统拜登
09:24
are evangelists for the idea
175
552680
1696
他们都传播这个理念：
09:26
that people should be
partners in research.
partners in research.
176
554400
2480
“公民应该参与科学研究。”
09:29
This is a founding principle
of our organization.
of our organization.
177
557680
2600
这也是我们组织创立的原则。
09:32
Sure, it's really hard
178
560960
2136
当然，研究并发展医学干预和治疗
09:35
to discover and develop
interventions and therapies.
interventions and therapies.
179
563120
3200
是很艰难的。
09:39
The science is hard,
180
567480
2336
科学本身就难，
09:41
the regulatory regime is difficult.
181
569840
2280
法规也很严格。
09:44
There are a lot of stakeholders
with lots of interests
with lots of interests
182
572960
3016
很多手中握有重大利益的投资人
09:48
and misaligned incentives
like publishing, promotion and tenure.
like publishing, promotion and tenure.
183
576000
4280
以不当的激励方式比如发布、晋升、
提供终身职位的方式吸引着科学家。
提供终身职位的方式吸引着科学家。
09:53
I don't fault scientists
for following this path,
for following this path,
184
581360
3416
我不怪科学家们跟他们走，
09:56
but I challenge them and us
to do this differently.
to do this differently.
185
584800
2840
但我希望他们和我们一起
做些不一样的事情，
做些不一样的事情，
10:00
To recognize that people
are at the center.
are at the center.
186
588400
3160
认识到“人”才是中心。
10:05
Genetic Alliance has experimented
187
593400
1776
要改变这些顽固的体系要做些什么，
10:07
in what it will take
to transform these crusty systems.
to transform these crusty systems.
188
595200
3480
“基因联盟”在这方面已经做过尝试。
10:12
Our goal is to work without boundaries.
189
600920
2240
我们的目标是“工作无障碍“。
10:15
That sounds abstract,
but for us it's quite practical.
but for us it's quite practical.
190
603880
3120
这听起来很抽象，
但是对于我们来说它是相当实际的。
但是对于我们来说它是相当实际的。
10:21
When we're frustrated
that entities won't share data --
that entities won't share data --
191
609400
3696
当我们感到沮丧的时候，
（相关团体不愿意分享资料——
（相关团体不愿意分享资料——
10:25
data that comes from people who gave
their energy, their time, their blood
their energy, their time, their blood
192
613120
5096
那些来自人们的精力、时间、血样
甚至是他们眼泪的资料）
10:30
and even their tears --
193
618240
1520
10:32
we need to stop and ask,
194
620520
1616
我们需要停住并问：
10:34
"How is it true that we
could share, but we aren't?"
could share, but we aren't?"
195
622160
3120
“我们可以分享但我们却没这么做，
这是真的吗？”
这是真的吗？”
10:37
We're part of this system, too.
196
625840
1520
我们都是这个系统的一份子啊。
10:42
How do we make it
so that people can share ideas freely?
so that people can share ideas freely?
197
630440
4120
我们要怎么做才能让人们
自由分享这些想法呢？
自由分享这些想法呢？
10:47
So that people can take risks
and move closer to one another?
and move closer to one another?
198
635400
4480
怎样才能让那些冒险的人们
团结在一起呢？
团结在一起呢？
10:53
This leads to a dissolving
of us versus them,
of us versus them,
199
641480
3256
这让我们不再和他们对抗，
10:56
not only for organizations
but also for individuals.
but also for individuals.
200
644760
3360
这不仅仅是为了组织也为了个人。
11:00
If I'm going to ask
organizations or individuals
organizations or individuals
201
648720
3376
如果我要组织或者个人
去为这些原则奋斗，
11:04
to strive for these standards,
202
652120
2216
11:06
then I too need to explore
my own being and my practices.
my own being and my practices.
203
654360
4880
那或许我也要探索我自己
并付出行动。
并付出行动。
11:12
If I'm going to ask clinicians
and researchers and administrators
and researchers and administrators
204
660120
3256
如果我要求临床医生，研究人员和
管理人员
管理人员
去冒险，
11:15
to take risks,
205
663400
1576
11:17
then I, Sharon,
need to take risks as well.
need to take risks as well.
206
665000
3000
那或许，我莎朗，也需要冒险。
11:20
I need to face my personal fears.
207
668840
2840
我需要面对自己的恐惧。
11:24
My fear of not having enough impact.
208
672680
2880
面对我还没有足够影响力的恐惧，
11:29
My fear of not leading well.
209
677400
2480
面对我不能很好领导大家的恐惧，
11:33
My fear of not being enough.
210
681000
2920
面对我自己还不够格的恐惧，
11:38
Just before they entered their teens,
our kids stopped us in our tracks
our kids stopped us in our tracks
211
686720
3936
就在我们的孩子进入青少年之前，
他们用大人的口吻对我们
他们用大人的口吻对我们
11:42
and said, "You have to stop worrying
about making a difference,
about making a difference,
212
690680
3696
说道：“你们必须停止担心
你们要做出的改变，
你们要做出的改变，
11:46
making an impact,
213
694400
1256
产生的影响，
11:47
and instead, like us,
learn to live with disease
learn to live with disease
214
695680
3976
反之，要像我们，
学会和疾病共存，
学会和疾病共存，
11:51
rather than fight it."
215
699680
1880
而不是去抵抗它。”
11:56
I have to ask,
216
704600
1296
我不得不问，
11:57
where does all my fear come from?
217
705920
2240
我的恐惧从何而来？
12:01
The kids' declaration
shines a spotlight on that fear.
shines a spotlight on that fear.
218
709320
3760
孩子们的话像是灵光乍现，
让我明白那些恐惧
让我明白那些恐惧
12:05
It arises from a bedrock of love.
219
713760
3080
是源于坚若磐石的爱，
12:09
I love Elizabeth and Ian.
220
717920
2560
我爱伊丽莎白和伊恩
12:14
I love people with PXE.
221
722320
2120
我爱患有PXE的人们
12:17
I love people with any disease.
222
725520
2120
我爱所有身患疾病的人们。
12:20
I love people.
223
728720
1200
我爱所有人。
12:24
Some of my colleagues have discovered
that it is not death we fear,
that it is not death we fear,
224
732520
4616
我的一些同事发现
我们害怕的不是死亡，
我们害怕的不是死亡，
12:29
it is the enormity of our loving.
225
737160
2200
而是我们无尽的爱。
12:32
This expansive love opens me to great pain
226
740760
4776
博爱给我带来的巨大痛苦
12:37
as I face loss.
227
745560
1720
犹如我面对失去时
感受的痛苦一样。
感受的痛苦一样。
12:41
As I discover my fear,
228
749040
2360
当我发现我的恐惧时，
12:44
I discover that I
229
752160
1776
我发现
我和我周围人
12:45
and all those around me
230
753960
1616
12:47
have boundless capacity for love.
231
755600
2720
都充满了无尽的爱。
12:53
And I also discover
232
761640
1400
我还发现
12:56
as I move into this fear,
233
764240
1600
当我进入这恐惧，
12:59
that I can learn many new things
234
767400
2456
我可以学到很多新东西
13:01
and find paths
235
769880
1360
并找到
解决实际问题的方法，
13:04
to things like practical solutions
236
772320
3856
还能找到治愈和恢复健康的关键。
13:08
as well as the core of healing and health.
237
776200
3160
13:15
I don't fear fear the way I used to.
238
783000
3560
我不再像以前一样恐惧。
13:20
In fact lately, with enormous support
from all my fellow journeyers,
from all my fellow journeyers,
239
788560
5136
其实最近，在我同行的大力支持下
13:25
I notice that it's not a warning
the way it used to be.
the way it used to be.
240
793720
3320
我注意到恐惧不再是像以前那样
的一种警告方式，
的一种警告方式，
13:30
I notice that instead,
241
798040
2856
反而是一种
13:32
it's an invitation to go forward
242
800920
1896
前进的邀请。
13:34
because in it lies love
and the path to greater love.
and the path to greater love.
243
802840
3240
因为这基于爱并通往更伟大的爱。
13:39
If I turn with gentle curiosity
toward that fear,
toward that fear,
244
807640
3600
如果我只是以温柔的好奇心
面对这些恐惧，
面对这些恐惧，
13:44
I find enormous wealth
within myself and others
within myself and others
245
812800
5056
我发现我自己和身边的人
都内心充满感恩，
都内心充满感恩，
13:49
and the ability to step into challenges
that I never thought I could.
that I never thought I could.
246
817880
3320
也充满了面对挑战的能力，
这是我从未想到的。
这是我从未想到的。
13:54
My kids are ahead of me
on that path still.
on that path still.
247
822960
2360
我的孩子在这条路上仍然走在我前面。
13:58
At ages 29 and 27,
248
826360
1896
他们分别29、27岁了
14:00
they declare they are happy and healthy
249
828280
2456
他们表示很开心很健康。
14:02
despite having manifestations of PXE
in their skin and eyes and arteries.
in their skin and eyes and arteries.
250
830760
5120
尽管他们的皮肤和眼睛还有血管上
都还表现出患PXE的现象。
都还表现出患PXE的现象。
14:09
And so I invite you, us, we,
251
837160
3336
所以我诚邀大家，
14:12
to turn toward our fear;
252
840520
1576
一起来面对恐惧；
14:14
to embrace the things that scare us
253
842120
2936
去拥抱那些使我们恐惧的东西
14:17
and find the love at the center.
254
845080
2136
在其中找到爱。
14:19
We'll not only find ourselves there
255
847240
2216
我们不仅会发现自己在爱里，
14:21
but we'll also be able
to step into the shoes of those we fear
to step into the shoes of those we fear
256
849480
3976
我们还会代替我们害怕的人
以及害怕我们的人。
14:25
and those who fear us.
257
853480
1360
14:27
If we breathe into that fear
258
855440
2080
如果我们在恐惧中呼吸，
14:30
and are vulnerable with the systems
and people who challenge us,
and people who challenge us,
259
858560
4656
战胜挑战我们的系统和人们，
14:35
our power as changemakers
grows exponentially.
grows exponentially.
260
863240
4080
我们作为改变者的力量会
呈指数级别的增长。
呈指数级别的增长。
14:40
And when we realize
261
868400
1256
接着我们意识到
14:41
that working on our inner life
is working on our outer life
is working on our outer life
262
869680
3656
改变我们的内在世界
就是改变我们的外在世界，
就是改变我们的外在世界，
14:45
and outer work is inner work,
263
873360
2736
我们的外在世界呈现的
就是我们的内在世界，
就是我们的内在世界，
14:48
we get down to what is real
264
876120
2136
然后我们就能寻求真理，
并搞定事情。
14:50
and shit gets done.
265
878280
1416
14:51
(Laughter)
266
879720
1456
（大笑）
14:53
There is no limit
to what we can accomplish together.
to what we can accomplish together.
267
881200
3816
让我们一起同心协力，
创造无限可能。
创造无限可能。
14:57
Thank you.
268
885040
1216
谢谢！
14:58
(Applause)
269
886280
2560
（掌声）
ABOUT THE SPEAKER
Sharon Terry - Citizen biomedical researcherSharon Terry is developing ways for ordinary people to transform biomedical research and healthcare.
Why you should listen
Former college chaplain and Ashoka Fellow Sharon Terry is President and CEO of Genetic Alliance, a network of more than 10,000 organizations. She's the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), which affects Terry's two adult children. She has taken citizen science (discovering the gene for PXE, developing a diagnostic test, conducting clinical trials) to a national and international arena and is developing participant-centric pathways for ordinary people to transform biomedical research and healthcare. She serves in leadership roles for many collaborations focused on productively disrupting research and policy. Terry led the coalition that fought for the passage of the Genetic Information Nondiscrimination Act. In her spare time, she enjoys traveling and paragliding with her husband.
More profile about the speakerSharon Terry | Speaker | TED.com