Life was good for Julie Winter. The Auckland student was on track to finishing an honours degree in health science and had a promising academic career ahead of her. There was also talk of starting a family with her husband Teina.
But the 24-year-old was also extremely fatigued. She put it down to too many long evenings spent studying with her nose in a book. Then her eyesight packed up. She was misreading words and seeing double. But she shrugged that off as well, hoping it would resolve itself after a decent night’s sleep. It did and Julie was fine for a couple of months.
But then the double vision returned – this time, accompanied by a more ominous sign that what she was experiencing might be something more serious than just “too much schoolwork”.
She recalls, “I was losing my peripheral vision as well. Words were just black spots on the page and I started to lose the strength on my right side. I couldn’t even brush my teeth.”
However, the worst was still to come for sports-mad Julie, who has played basketball since her early teens. After turning up for a social game, the University of Auckland student found she couldn’t even bounce the ball.
“That was the day I knew something was really wrong,” she tells. And so a frightened Julie reported to the emergency department of her local hospital on a particularly busy night. She was told her symptoms didn’t appear to be serious and was then sent home. “They suggested I make an appointment with my GP if I was still worried, so I did the next day.”
Julie’s doctor was extremely concerned, sending her back to the emergency department for a CT scan and a chest X-ray. Alarmingly, the scan revealed lesions on the left side of Julie’s brain. The word “tumour” was mentioned.
I’m living my dreams! Julie as a blushing bride on her big day with (from left) Tracey, Emma, Ada, Savita, Teina, Jesse and Lincoln.
Julie recalls, “I was like, ‘What?’ I had already planned my weekend and was going to go out to lunch with friends. It was hard trying to wrap my head around the fact I might be really sick.”
She was admitted to the neurological ward at Auckland City Hospital the next day and, after an MRI scan and a lumbar puncture, Julie was diagnosed with multiple sclerosis (MS). Even though she knew a little about the condition because of her health studies, the diagnosis was still terrifying. She recalls, “It was a huge shock.”
Julie is extremely young to be diagnosed with MS, an autoimmune disease that affects the central nervous system in approximately one in 1000 New Zealanders. It predominately afflicts women with European ancestry, and is rare among Asians, Maori and Pacific Islanders.
Julie’s social-worker mum Savita is Tongan-Fijian, while her father Wayne is Pakeha. “My parents were devastated,” she tells. “They struggled with it because they felt it was their fault.”
Capping off a tough year with niece Ada.
Fifteen months after the initial diagnosis, Julie is still coming to terms with what can be a seriously debilitating disease.
“I know that having MS isn’t a death sentence, but realising that this is how my life is now has been difficult to adjust to,” she explains.
“It’s very frustrating.” Not only has it robbed her of a year of study, but it has also thrown a cloud over her plans to start a family.
With her whanau (from left) Emma, Tracey, Jesse, Lincoln, Savita and Wayne (front).
Julie explains, “I’m bit apprehensive now. Although being pregnant is a protective mechanism against further relapses, I’d have to come off my treatment. And the first three months following birth are really detrimental to people with MS – a lot of them have serious relapses.”
Julie’s husband Teina, 25, adds, “I feel scared and nervous that things will change overnight with her condition. When she was diagnosed with MS, I felt relieved that there was a reason for everything, but now I worry that she won’t be able to do anything that she wants to do.”
The devoted pair live with Julie’s mother, her siblings Tracey, 27, and Jesse, 17, and her five-year-old niece Ada, in the house she grew up in. Julie acknowledges it’s been a godsend having family around to help with even the most basic of tasks, such as shopping.
“It’s definitely affected my independence and it’s taken a big toll on my social life,” she tells. “I have felt quite alone – my friends are off doing things and I’ve just felt too exhausted. It’s the unpredictability that’s hard to deal with. For every relapse, there’s no guarantee things will come right.”
Still, Julie is determined having MS isn’t going to define her. She wants to “live a good life”, she insists. “There is better treatment and ways to manage MS now. Having it doesn’t mean you will be wheelchair-bound one day. It’s about learning to manage your new struggles. Having MS doesn’t mean you can’t still be you. I want to do great things.”
And you can bet that, with the help of her loving family, this budding academic will do just that!
