In November 1996, Rachel Kerr was in the middle of her high school exams. Her life, up until this point, was carefree. She was busy making plans for the future beyond the tedium of studies.

It was easy for her to ignore her vision getting blurry and the fact she couldn't concentrate as well as she once could. Then her coordination started going downhill.

She knew something was wrong and decided to see a doctor. The Royal Flying Doctors transported Rachel to Brisbane for a series of tests.

At the age of 17, Rachel was diagnosed with MS.

Multiple sclerosis (MS) is a disease of the central nervous system which can affect the brain, spinal cord and/or optic nerve. Everyone with MS has a different set of symptoms which vary and can change in severity and duration, even in the same person.

After examining her MRI, the specialists were baffled as to how she had been eating or even talking with so much disease activity in her brain. 

This was frightening news.

One of her doctors in Brisbane went through a list of careers she wouldn’t be able to pursue and things she wouldn’t be able to do in life, the type of things that require coordination.

“It was hard to hear because, as a 17-year-old, you’re not used to having limitations,” said Rachel.

“But it’s not given the same negative connotations as it used to. That’s not saying it’s a really happy diagnosis, but it doesn’t have to stop you.”

Researchers still haven't found what causes MS but it's possible that a combination of inherited genes makes some people more susceptible than others to whatever triggers it.

Rachel’s ultimate dream is that there will one day be a cure.

“I don’t know when that will happen. But I do hold a lot of hope that it’ll happen in my lifetime.”

It’s difficult for her to do a lot of things. One of her main symptoms is fatigue, which can be crippling. It permeates everything she does and there’s nothing she can do about it.

“I find when I get tired all of my symptoms get worse. My balance gets worse. Certainly, my cognition gets worse. So trying to think is problematic," said Rachel.

“Most people roll out of bed in the morning and they just get dressed to go to work, whereas [for] myself, and many other people I know with MS, they really have to consider all of their actions because that’s using up valuable energy.”

Rachel is currently an ambassador for MS Queensland, and has made it her aim to change the face of MS.

“MS had a face of a really old person’s disease who are in wheelchairs and barely mobile. In some cases that’s true... but there are also a lot of young people who have MS and who are living relatively normal lives.”

Although she was diagnosed young, most people with MS are now diagnosed between the ages of 20 to 40. The scale is tipped in favour of females.

Rachel doesn’t complain about the hand she has been dealt and considers herself lucky to not only have a husband who supports her through thick and thin, but who also helps to take care of their young son Tate when she is not able to.

Spending time with her son is the number one priority.

“There are a lot of things I can’t do and that changes all the time,” said Rachel.

“The lists of the things that I can’t do probably grows with regularity. But, because you’ve got that limited stock of energy you also become a lot better at choosing what you’re going to spend your energy on.

"So I choose to spend my energy with my son where I have it. Because that’s the most important thing: making sure he has a relatively normal upbringing, as much as he’s going to have with me.

“I’d really like for my little boy, and my little one on the way, just to be able to say that MS was a disease that mummy used to have. I’d really, really like that.”

Originally published on ABC Open and screened on ABC TV.

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