health

The moment new mother Helen Genito discovered she had multiple sclerosis.

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Instead of savouring the trials and tribulations that come with caring for a newborn, at 37-years-old Helen Genito was grappling with something that no new mother ever imagines.

“I’d just had a baby. She was five-weeks-old but I didn’t feel quite right, I didn’t feel like myself and my balance wasn’t 100 per cent. My husband had taken me to two emergency departments at the time and they had said ‘there’s nothing wrong with you all your vital signs are fine’,” Genito says.

After doctors suggested the symptoms might have indicated post-partum depression Genito attended a maternity hospital for monitoring.

“But I didn’t feel depressed I didn’t want to kill myself I didn’t want to kill my baby, we had done IVF to conceive her.”

“I was there for 24 hours and got all sorts of tests done and the next day my mouth had gone off to the side. I was drooling and I couldn’t close my mouth. I was thinking I’d had a stroke,” Genito says.

But they couldn’t give her an official diagnosis.

"I was drooling and I couldn’t close my mouth." Image: Supplied.

“My balance had started to go then I fell out of bed a few times I had loss of bladder control, my eyes - I had optic neuritis and my vision had gone.”

After being in the hospital for a month, Genito completely recovered and was sent home. But her symptoms shortly returned.

“My daughter had started crawling, she was seven months old and she was making her way up my legs to stand up. But I couldn’t feel her touching me. I knew that numbness was a symptom of multiple sclerosis and I went to the neurologist and they said yep, there’s your official diagnosis it’s MS.”

Genito admits there was a small feeling of relief having finally found the answer.

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She is one of more than 23,000 Australians diagnosed with this unpredictable disease of the central nervous system. A disease that, at this stage, is incurable.

There is no one symptom that can indicate the presence of MS and no single test can establish an accurate diagnosis. It’s also very difficult to predict the course of the disease as it varies greatly from case to case — with some people living relatively normal lives and others’ heavily affected by the symptoms quite rapidly.

The average age of diagnosis is 30 years old and 75 per cent more women are diagnosed than men. And yet no one understands why some people are susceptible and others are not.

Genito's struggle was made all the more challenging with her husband’s death, when her daughter Jamie-Marie was only two years old.

“Oh my poor darling. She gets really frustrated with MS because I can’t do the things that other mums can do,” Genito says.

"I can’t do the things that other mums can do." Image: Supplied. 

Ongoing treatment has meant that Genito hasn’t had a relapse in five years but the disease still affects her greatly, day-to-day.

“I get very, very fatigued. Very tired, so I have to make sure I rest throughout the day because I have a nine year old that I have to get to school and take care of when she gets home so that’s when I need my energy. I’m usually in bed by 9pm, I’m in bed before my daughter.”

Genito says that her daughter is essentially her young carer.

“I had a relapse when she was four and I was in the hospital for a month and when I came out she said that when she grew up she wanted to be a doctor ‘so I can make you better’. Which has changed somewhat, she now wants to be a researcher or a scientist or teaching and educating people about MS. I think that’s a big impact for a child, to be thinking that far down the track at such a young age.”

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Genito hopes she still gets to have the future she’s always imagined.

“There are some days when I feel like I hope I don’t die too young I want to be able to watch my daughter grow up and have children and have her own family and all that kind of thing.”

"I want to be able to watch my daughter grow up." Image: Supplied. 

The support her family has received has made a real difference, particularly for her daughter.

“The MS organisation holds camps and family days out and I think it’s important for my daughter to be around other children who have a parent with MS so they can talk about it and talk about how they feel and things like that.”

Every working day four Aussies, just like Genito, will face the daunting news that they have MS. That their life will be changed forever.

But there are ways to help and support these people and their loved ones so nobody faces MS alone.
On Sunday 5th June, thousands of Aussies will come together at the MS Walk + Fun Run in Sydney, Melbourne and Canberra. You can register today at: mswalk.org.au

The event is the largest on the MS calendar and is wheelchair and stroller friendly so is the event for all the family, including your family pooch. Whether you want to run or walk the five or 10 km, make sure you sign up and fundraise for this excellent community event that’s making a real difference in the lives of people like Helen Genito.

Have you or someone you know had an experience with multiple sclerosis?

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