When Yasmine Probst was diagnosed with multiple sclerosis 20 years ago, she didn't know much about it.
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"I'd heard about the MS read-a-thon but that was about it," she said.
As a dietitian studying for her PhD, she immediately started to look into what could be done from a nutrition perspective to help manage the disease.
Fast forward two decades and the University of Wollongong Associate Professor has been appointed an MS Australia Senior Research Fellow, and just got funding to begin an Australia-wide clinical trial to test a new telehealth method of delivering lifestyle advice to people with the disease.
She is one of two UOW academics awarded more than $300,000 in funding from MS Australia to target the most commonly acquired chronic neurological disease affecting young adults.
Her clinical trial will test lifestyle management to help people living with MS to lose weight, which can be difficult as many people with the disease have a reduced ability to move and some medication can cause weight gain.
"We plan to help people living with multiple sclerosis who are carrying additional weight in managing their condition," she said.
"And we believe that by helping those people to manage their weight, it should have a flow on effect to management of their other symptoms related to the disease as well."
Using telehealth systems developed during COVID, she will bring together health professionals, including experts in nutrition, exercise and psychology, and will compare the outcomes of people in the trial with those getting the usual care delivered by an MS nurse.
Participants will be drawn from across the country, with researchers from Murdoch University, the University of Melbourne, Monash, the University of Canberra and the Menzies Institute for Medical Research also involved.
Rapidly rising diagnoses, but still no cure
MS affects three times more women than men in Australia and is on the rise, with more than 33,000 people currently diagnosed.
There is no known single cause, but many factors - including ethnicity, gender, viral infection, climate and sun exposure, vitamin D, smoking, stress, diet and physical activity - can contribute to its development and progression.
In the 20 years she's had MS, Prof Probst said management of the disease had become a lot more holistic, with less of a focus on medication.
"Medication is definitely important, but it's not the only way to help people manage their condition and the number of disease modifying therapies has increased substantially," she said.
"We just know so much more than we did back then, and it's exciting that, you know, only 20 years it's come that far."
"I love to think that in another 20 years we've figured out how to cure it or even where it came from."
More at stake when you have the disease
She said having MS had helped drive her own research, but that she was most motivated to try and help others.
"After my diagnosis, I realised that I'm quite lucky, I'm trained in an area that many people don't know how to manage," she said.
"I've had a number of comments from colleagues of mine and friends who also had multiple sclerosis who just said, 'I don't know what to do, I don't know where to start.'
"So that led me to shift my research and target the population that I was living within, because I'd realised that there's so little research in the area as well.
"Nutrition in MS was a very under researched area but one that's definitely of need and a priority within the MS community."
Prof Probst is far from the only researcher to turn her work towards the disease she has a personal stake in; UOW's revered Professor Justin Yerbury, who died aged 48 of motor neurone disease last July, was famous for his work progressing a cure for the disease which killed multiple members of his family over generations.
As her career has progressed, Prof Probst said she had realised having a personal stake in research was "more common than you would think" - and said being a part of the community they were examining gave academics a valuable boost to their research.
"It definitely helps drive the motivation," she said.
"And that driver is really important for researchers, because it helps with the way you write, it helps with the way you communicate and helps with knowing where to next.
"It also reminds you that we need to keep on checking in with others because we can't assume that one person is going to be the same as the next, particularly when you have a chronic condition that is highly variable like multiple sclerosis.
"At the moment, the inclusion of lived experience in research is becoming a priority for a number of different areas of health, and we're really hearing the importance of the consumer voice and embedding the needs and wants of the community that are being targeted."