Emily Felix

for water and all liquids and my breathing will also progressively get worse to the point that I might need ventilator.

Yeah, I'm very afraid.

I suppose during the days I can kind of compartmentalise the disease and then my daily life and I just get on with things.

But at night time when it's just me and my thoughts in bed, it's what scares me, it terrifies me.

Yeah.

I know I'm realistic that it will keep progressing and it is totally out of my control.

Even though I'm working so hard on keeping every policy I have,

I go to the gym twice a week to preserve the strength I have.

I do exercise at home as often as I can.

I'm doing the best I can, but it's out of my control at the end of the day.

I suppose that's why it's very hard to understand why someone who has this drug in their hands and in their control

can turn around and say it's not worth it.

Yeah, so I suppose a big misconception about the drug is that it's ineffective because it won't save my life.

It won't reduce mortality rates.

But I suppose for me, the central issue is my quality of life and also preserving a little bit of independence that I still have and dignity.

I think these outcomes matter enormously, just as much as living longer.

Yeah, living longer was never my intention, and definitely I know the patients with pre-drug attacks that are campaigning.

We have never claimed this, the life-saving drug.

We just want to live our lives with a bit of quality of life.

Like, who wants to survive...