Emily Felix

So I live with that worry.

Luckily for me, it has stayed mild for quite a few years, but I'm realistic and I know

not to take that for granted, that with the nature of the disease, everything will progress.

And that is the reason for a shorter life expectancy.

Yeah, it's very hard, but I'm lucky I've got really good supporters around me.

My family and friends have always been great to me.

I've always grown up with...

My family tell me there's no reason I can't do what I want to do when I can't achieve what I want to achieve.

And I've worked very hard and I'm still working hard and achieving big goals.

I'm very ambitious.

But yeah, mentally, it does take a toll.

And I think that's...

an aspect often forgotten about in these discussions about drugs, reimbursing drugs for diseases like we are humans and it's very hard emotionally.

I studied business studies and then I did a master's in human resource management.

So, yeah, I did those and then I went straight in to a job I love and I've been working there full time for the last four years.

Yeah, definitely.

I do it, but it's not easy.

And I'd be lying if it was easy as everyone else says.

all my colleagues, like it is extremely difficult for me, particularly with fatigue, side of Friedrich's attacks, yeah.

I'm absolutely shattered by the evenings and I can't do anything in the evenings really.