Name: 失明的人有一天能重見天日嗎？ (Can (and should) we cure blindness? | BBC Ideas)
Uploaded: 2025-07-23T21:01:10.000Z
Duration: 4 min 58 s

I have a condition called Leber's Hereditary Optic Neuropathy which I developed when I was 21.

我有一種叫做「Leber遺傳性視神經病變」的疾病，我在 21 歲時發病。

程度副詞

My central vision is is a blur and it was extremely scary when it first happened.

我的中央視野一片模糊，而剛發生時真的非常可怕。

I've had to adapt in so many different ways.

Over the last few years, there have been some amazing breakthroughs in the science of medical treatment for certain forms of blindness.

過去幾年，在某些類型的失明醫療治療上，科學界有一些令人驚艷的突破。

But I wonder, does everyone in the blind community want to be cured?

但我想知道：失明社群中的每個人都想被治療嗎？

Losing your sight at a young age is actually quite rare.

年紀輕輕就失明其實相當罕見。

In fact, 80% of people living with sight loss in the UK are over 65,

事實上，英國有 80% 的視力喪失人口都超過 65 歲，

and the most common cause of sight loss is AMD, age-related macular degeneration.

而視力喪失最常見的原因是「黃斑部病變」（AMD）。

But in 2018, there was a medical breakthrough in the treatment of AMD.

但在 2018 年，AMD 的治療出現了醫療突破。

To find a cure for blindness that affects many patients.

找出治療影響許多患者的失明方法。

In a matter of weeks to put them into the patients.

在數週內就能將它們植入患者體內。

It was an incredible day to know that something that you'd worked on, and multiple scientists and multiple clinicians, was making a difference in patients with vision loss.

能知道自己與多位科學家、臨床醫師共同努力的成果，真的能改變視力喪失患者的生活，那是一個令人難以置信的日子。

[This has led to research into other conditions such as 'best disease']

【這也促進了對其他疾病的研究，例如「Best 病」】

Something that affects your your central vision.

Every gene has two copies and in best disease,

每個基因都有兩份拷貝，而在 Best 病中，

one copy has a mutation and that causes a build-up of toxic waste products that causes the death of those retinal cells.

其中一份發生突變，會造成有毒廢物堆積，進而導致視網膜細胞死亡。

She's been using gene editing to try and fix the DNA mutation that's causing the disease in these patients.

她一直使用基因編輯來試圖修復患者 DNA 中造成疾病的突變。

I was diagnosed when I was about 9, 9 years old, so about 52 years ago.

我大概在九歲時被診斷，也就是大約 52 年前。

Real shock that we had was with the birth of our eldest child, who was diagnosed at the age of 3 with having the condition.

我們真正受到震撼的是大兒子出生後，他在三歲時被診斷出罹患同樣的疾病。

We took a skin biopsy from Andrew to grow skin cells in the lab.

我們從 Andrew 身上取了一塊皮膚樣本，並在實驗室培養皮膚細胞。

We reprogrammed those skin cells into stem cells and then we pushed those cells to become the retinal cells.

我們把那些皮膚細胞重編程成幹細胞，再讓它們分化成視網膜細胞。

And we can use those cells to test new medicines to see whether they work in a patient.

我們可以用這些細胞來測試新的藥物，看看是否對患者有效。

And if it has a benefit for me down the line, brilliant, but one of the big hopes is that it'll have a benefit for my future.

如果未來能對我有幫助，那當然太好了，但更重要的是，我希望這能造福我孩子的未來。

There are a lot of patients who really do want a cure for macular diseases, but I understand it's a choice.

有許多患者真的很希望能治療黃斑部疾病，但我也理解這是一種個人的選擇。

How do you feel about this idea of curing blindness?

你對「治癒失明」這個想法有什麼感受？

I have lived my life this way and I'm very comfortable with it.

我一直以這樣的方式生活，而且我很習慣。

I've adapted and I've learned how to do things.

我已經適應，並且學會如何處理生活中的各種事。

You know, if I was to get my sight back tomorrow,

你知道，如果我明天就恢復視力，

it would also be terrifying in the sense that I would have to relearn, but as a sighted person.

那其實也會讓人害怕，因為我得重新學習一切——但這次是以「有視力的人」身份。

I don't think I'm faulty, if that makes sense, you know.

我並不覺得自己「有缺陷」，如果你懂我的意思。

And I... but also I can see it being an incredible thing for someone else.

而且……我也能理解這對其他人來說可能是件非常了不起的事。

It's a rich, compelling identity that comes in so many forms that blind people can be rightly proud of.

它是一種豐富而有力量的身份，具有多種形式，讓盲人可以理所當然地感到驕傲。

So would I personally take the cure for my condition?

所以我個人會接受治療自己疾病的療法嗎？

It's an inherent part of my identity now.

這已經成為我身份中不可分割的一部分。

I would prefer to have the life I have now.

It's really important that we make the world as it is accessible to blind people now.

我們現在就必須讓世界變得對盲人更友善、更容易使用。

We need to be able to access transport, information, education, employment.

我們需要能夠使用交通、資訊、教育和就業。

Just waiting for these medical breakthroughs is not going to make our lives better now.

僅僅等待醫療突破，不會讓我們現在的生活變得更好。

You have a choice whether you want to have a treatment or not.

It should be left to the patient really to decide.

是否接受治療，其實應該由患者自己決定。

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失明的人有一天能重見天日嗎？ (Can (and should) we cure blindness? | BBC Ideas)

incredible

extremely

access

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