Meet the mum helping Kiss Goodbye to MS

Emma Giunti had just returned from her honeymoon with her new husband, Tony, when she was diagnosed with multiple sclerosis, a condition of the central nervous system that interferes with nerve impulses within the brain, spinal cord and optic nerves.

"I had never heard of MS before," she tells Essential Kids. "I thought it was an older's person's disease."

It was 2010 and Ms Giunti, who lives in Sydney, had woken to find "something strange going on" with her eyes. "The best way I can describe it is it was like looking through a waterfall - except there was no tropical setting." After a visit to her GP, Ms Giunti underwent a number of eye tests before the diagnosis was confirmed by her neurologist.

For the then 33-year-old, the symptoms had been subtle: pins and needles five years earlier, the problem with her eyesight (known as optic neuritis), and a little numbness in the top of her foot. "My handwriting was also a little bit messy," Ms Giunti adds, explaining that she'd simply put it down to not having written very much in the weeks prior.

Far from being an "older persons disease", however, Ms Giunti soon realised it was the exact opposite. "MS is a young person's disease," she says, noting that the average age of diagnosis is just 30 years old. "And three out of four [who are diagnosed] are women."

As a newlywed, Ms Giunti's first thought was "will MS affect my fertility?"

"We'd planned to have kids," she says, "and the day after I had the eye tests I looked online and did some investigations about fertility. What I read said it didn't [affect it] and that there are lots of mothers living with MS."

Although the pair were initially concerned about whether MS could be passed on to their children, when they discovered the risks were low, they decided to start a family.

Now 41, Ms Giunti is the proud mum of two little girls, Elodie, 6, and Aggie, 3. And while she was fortunate to experience a relatively easy pregnancy she knows others affected by MS who weren't as lucky.

"I know of a woman who gave birth and the next day she had optic neuritis so badly she went blind for six months," she says, adding that while women are less likely to relapse during pregnancy, postnatally the risk of relapsing is higher. "Imagine not seeing your child's face for the first six months - and trying to be a mother."

While Ms Giunti chose to have a second baby, she says her friend, a mother-of-one with MS, decided not to. "It depends on the severity of people's symptoms," she says, "particularly MS fatigue, which affects around 80 per cent of people."

Ms Giunti says she's one of the "lucky ones" and only experiences mild symptoms. " There are so many different symptoms of MS," she says, " but we all suffer from fear - the fear of not knowing how the disease will progress. I could wake up tomorrow morning and not be able to use my legs or not be able to see. You just don't know.

"You don't want to have your kids pushing you around in a wheelchair and not be able to participate in their lives. That's a sad thing for many parents who have MS ... you don't want to be a burden to your kids."

Ms Giunti with her husband, Tony, and daughters Elodie and Aggie.

Ms Giunti says she hasn't had the "Mummy has MS talk" with her girls just yet, as she doesn't want to frighten them. "I'd be telling them I have a chronic disease and they'd see me looking fine and going off to yoga," she says. "They know little bits and pieces but I'm hoping it will just evolve ... I have friends who have MS, who they've met. They've seen that they're fine, too. It will be drip fed to them, I think, and not be an alarming chat."

When the time comes for more detailed discussions, MS Australia has also developed an app, in conjunction with the Medikidz and the Australia and New Zealand Association of Neurologists, to help provide kids with medical information about MS at an age-appropriate level.

When the "dust settled" on her diagnosis, Ms Guinti knew she wanted to help. So she started speaking at events, volunteering and setting up a local "coffee catch up" for mums with MS in her area.

Now, the busy mum-of-two is an ambassador for MS Research Australia's Kiss Goodbye To MS Campaign. "It's a fun campaign about raising funds and awareness for MS research. A lot of young women are diagnosed so it's got a young woman's focus."

Ms Giunti has been wearing red every day this month, chronicling her journey on Instagram. She's aiming to raise $5000 for MS research, in time for World MS Day on May 31, through fundraising.

This year's theme is #LifewithMS, with those affected by the condition sharing their tips across social media.

Ms Giunti's advice for other mums living with MS is simple: listen to your body and look after yourself. "Self care is always important for mums," she says, "but even more so for mothers with MS. Sometimes you have to think 'the dust can wait'. It's been waiting in my place for about 10 years!"

And while she might not be wearing red lipstick for the school runs after next week, Ms Giunti says, "The fear remains. We need to keep going, red lippy or not, to find a cure."