机器翻译字幕，仅供参考：
osteogenesis imperfecta is a genetic
成骨不全症是一种遗传
disorder where the bones are weaker
性疾病，其中骨骼较弱，
causing them to be more susceptible to
导致它们更容易
fracture it's often known as brittle
骨折。它通常被称为脆
bone disease so osteogenesis imperfecta
性骨病，因此成骨不全
is a spectrum of disorders can be quite
症是一系列疾病，可能非常
mild and not really cause any major
轻微，不会真正引起任何重大
problems at all but for other patients
问题，但对于其他疾病
it can be more severe causing them to
患者可能会更严重，导致
have multiple fractures and this can end
他们多处骨折，这最终会
up affecting their mobility and some
影响他们的活动能力，有些
people they may even need to use a
人甚至可能需要使用
wheelchair my oh I affects me on an
轮椅，哦，我每天都会影响我，
everyday basis perhaps up my spine fuse
也许是我的脊椎融合，
it's a lot of like secondary issues as
这很像 次要
well you need a lot more pain relief
问题 你需要比许多其他人更多地缓解疼痛
than many other people do and it also
，这也会
affects my hearing my arms are quite
影响我的听力
brittle(易碎的)compared to my wax( 蜡)because I
与蜡相比，我的手臂很脆，因为我
have metal rods which means I have to
有金属棒，这意味着我必须
use wheelchair constantly things made
经常使用轮椅，
because I often more tired you might be
因为我经常更多 累了，你可能会被
seen as just being a bit lazy it effects
视为有点懒惰，这对
me kinda mentally because I don't know
我有一些心理影响，因为我不
if I should blame my condition
知道我是否应该责怪我的状况，
well I doesn't stop at borders it could
我不会在边境停留
be great if you're in denmark
如果你在 丹麦
could be great if you're in the UK
会很棒 如果你在英国可能会很棒
because you know you can have an
因为你知道你可以有
opportunity to be treated in normally
机会接受正常的治疗
will get everything very good if you
如果
were in a wheelchair you will get
你坐在轮椅上你会得到很好的一切
modified cars and everything the
改装汽车和一切
services for children have been very
为儿童提供的服务
well developed in this country but we
在这个国家已经非常发达，但是我们
need to improve the care for them as
需要改善对他们的照顾，因为
they become adults and for the rest of
他们已经长大成人，在
their life something has gone much
他们的余生中，有些事情
slower than the other things and it's
比其他事情进展得慢得多，而且
from different from countries to
与 国家到
countries how system in the UK really
国家 英国的系统有多
good I think in many ways in some ways
好 我认为在很多方面 在某些方面
not all doctors know about Hawaii it's
并不是所有的医生都知道夏威夷
really annoying sometimes that some
有时有些医生不听真的很烦人，
doctors don't listen even though
即使
something might happen for one kind of
一种人可能会发生一些事情，
person otherwise it might be different
否则可能会有所不同
for me and so they can't treat us all
对我来说，所以他们不能对我们
the same it can be really hard to
都一视同仁。当它不是立即可见时，很难
explain to people how it affects you
向人们解释它如何影响你
when it's not instantly visible so you
，所以你
probably get not good treatment and I'm
可能得不到很好的治疗，我
afraid I have to go to a specialist
担心
centre if I want get care BBS are
如果我想得到护理，我必须去专科中心 BBS
working closer with the O IFE to help
正在与 O IFE 密切合作以帮助
improve prospects but we still need to
改善前景，但我们仍然需要
raise awareness across the board all
在所有国界全面提高认识
borders and that's what we're trying to
，这就是我们现在试图
teach you right now this isn't just
教给你的 不仅
limited to the more obvious forms we
限于更明显的表格，我们
need to include the more invisible my
需要包括更不可见的
order forms - yeah I have a wheelchair
订单表格-是的，我有轮椅
and I have helpers pain sometimes yeah
，有时我有帮手疼痛，是的
and this sucks but yeah I'm having a
，这很糟糕，但是是的，我
good life is not because my life sucks
过着美好的生活不是因为我的生活 很糟糕
shouldn't me particularly being in a
我不应该特别
wheelchair doesn't mean I can't do
坐在轮椅上并不意味着我不能
things I can still drive I'm still live
做事我仍然可以
independently I mean it's like anyone
else I think I'd want people to speak to
me about my oh I rather than making
开车 我不会
assumptions(假定)about how it affects me and
假设它对我的影响，
thank you so much for watching
非常感谢你的收看
联系客服
