AT just 17, in the middle of her VCE exams, Rosebud resident Deanna Renee was diagnosed with Multiple Sclerosis. Suddenly her whole world looked vastly different.
“I literally woke up one day and could barely see, my vision loss was so bad it was just like looking through a tiny black dot” she said.
Renee’s ophthalmologist diagnosed Optic Neuritis, which was a red flag for Multiple Sclerosis, and after an MRI discovered lesions on her brain, the diagnosis was confirmed.
It would have been very easy to give up dreaming about the future, but Renee refused to give in to the negative stereotypes that confronted her.
“There was a lot of stigmatising, there still is, but it is just because people don’t know much about MS, and really, everyone has a different experience,” she said.
“There still can be a lot of negative reinforcement, like people might say, ‘oh, you won’t be able to finish your studies’, or ‘you won’t be able to do….”
Thankfully, Renee’s eyesight returned and rather than give into the diagnosis completely, she finished her VCE and went on to complete a Bachelors Degree in Social Sciences, a Masters of Science in Medicine and finishing in the top percentile of her class, and has almost finished her Masters in Social Work. In between she has backpacked around south-east Asia solo for four weeks, and spent six weeks backpacking in India.
Despite admitting to bouts of self-doubt and pity, Renee has pretty much achieved all her goals so far.
The 32-year-old’s current challenge is to raise the profile of MS, and in particular the need for younger people with MS to be able to connect with each other as peer support.
She says while services such as MS Australia has been wonderfully supportive, and has helped by providing advice on treatments and support, she would have liked to have mixed with more MS sufferers her own age when she was dealing with the diagnosis.
“There is support out there, and peer groups, but what I’d really like to see is more peer support for people my age,” she said.
“I was diagnosed at 17 and am in my 30s now, and have found there to be a lack of representation for younger people specially to connect with,” she said.
“For me, my first representation of those with MS were older people with heavy disability, while there is nothing wrong with that, I found it very confronting at the time and did not seek any further support in my 20s.
“I am very able bodied and my MS is completely invisible, but the message I was given at an early age was my MS would limit me from achieving my future aspirations.”
In October Renee will undertake the 100km Tuscany trail to raise vital funds for MS research. Thursday 7 July marks 100 days to the trip.
Local Rosebud restaurant The Milbri has pledged to donate to the cause $1 from every coffee sale on a single Saturday, with Dromana restaurant La Onda Latin Mex pledging $5 per burrito on a date to be announced.
To help Renee reach her goal of $10000, go to https://kissgoodbyetoms.org/fundraiser/deanna-renee/
First published in the Southern Peninsula News – 5 July 2022