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Emma Gillespie

๐Ÿ‘ค Speaker
881 total appearances

Appearances Over Time

Podcast Appearances

The Daily Aus
What does life with MS really look like?

And she told me a lot more treatments are available now compared to a decade ago.

The Daily Aus
What does life with MS really look like?

Exactly.

The Daily Aus
What does life with MS really look like?

And that gap is really what this survey is about.

The Daily Aus
What does life with MS really look like?

So it found over 75% of those who were aware of MS said they either don't believe or don't fully agree that people with MS can have an active and happy life, even with treatment.

The Daily Aus
What does life with MS really look like?

But when researchers asked people living with relapsing remitting MS what their lives actually look like, nine in 10 said that they feel positive about their future.

The Daily Aus
What does life with MS really look like?

The overwhelming majority said that with the right treatment and support,

The Daily Aus
What does life with MS really look like?

they can live actively and fully.

The Daily Aus
What does life with MS really look like?

So that really paints that picture of that disconnect between public perception versus lived experience.

The Daily Aus
What does life with MS really look like?

So the real world implications of that attitude and that gap really show up in the everyday lives of people living with RRMS.

The Daily Aus
What does life with MS really look like?

So one example is the research found that three in four people living with this type of MS have had their ability to do their job questioned.

The Daily Aus
What does life with MS really look like?

So that's by their colleagues, by their managers, that's after telling someone about their diagnosis.

The Daily Aus
What does life with MS really look like?

So disclosing to a manager or colleague saying, hey, I'm living with RRMS,

The Daily Aus
What does life with MS really look like?

They've then had three and four have had the ability to do their job questioned.

The Daily Aus
What does life with MS really look like?

So that goes to the stigma that it creates.

The Daily Aus
What does life with MS really look like?

Exactly.

The Daily Aus
What does life with MS really look like?

And so this is a stigma not being exacerbated by strangers.

The Daily Aus
What does life with MS really look like?

We're talking about people that they work with by your closest trusted colleagues and people in your life.

The Daily Aus
What does life with MS really look like?

To that point, one in two people with RRMS have been told they shouldn't have children after disclosing their diagnosis by people close to them.

The Daily Aus
What does life with MS really look like?

So we can think of stigma as being really far away.

The Daily Aus
What does life with MS really look like?

But for people living with MS, that stigma can show up from the people that they're closest to.