Two years ago, Sarah Joyce was living independently, working a job she loved in the aged care industry. Now the 32-year-old relies on the care of her parents, physically weakened by the disease that ravaged her body in August 2016. A disease that robbed her of several fingers and toes, cost her several organs, and landed her name on the transplant list.
Sarah was visiting her parents’ on the NSW Central Coast the evening the symptoms started. It started out feeling like a cold; that vague under-the-weather sensation, tiredness, a foggy head. Then came the fever.
“I was actually meant to be away working that week, and it was just by chance that my schedule changed. It was lucky, because had I not have been with them, I think the outcome would have been very different,” she told Mamamia.
Within hours her fever had soared, and was joined by copious vomiting, sensitivity to light and pinprick spots on her eyelids.
“I kept saying to Mum and Dad, ‘I feel infected. I don’t feel right,’” the Queensland woman told Mamamia. “I just kept repeating it; ‘I don’t feel right, I don’t feel right.’”
“I didn’t actually realise that at the time but they were saying goodbye.”
As she became increasingly unwell, Sarah’s father drove her to the hospital, where baffled doctors pumped her with a variety of antibiotics in hope of quelling whatever infection had taken hold of her body. Then the rash appeared on her legs. Purple, spotty.
“As soon as I saw it I thought, ‘Oh f!’ I instantly knew that was bad. And then that’s probably one of the last things I remember, apart from my mum dad sister coming in,” she said. “I didn’t actually realise that at the time but they were saying goodbye. They’d been told to come in before they put me on life support and say goodbye, but they didn’t want to scare me.
“That’s something I’ll never forget.”
Sarah was placed in a coma for eight days.
When she woke, doctors explained she had contracted Meningococcal Septicaemia W, one of the five strains of the potentially deadly bacterium. Fortunately, one of the antibiotics doctors had administered Sarah was the right one. But damage had already been done.
"It was very scary [when I woke from the coma] because I physically couldn't move my arms and legs," she said. "And they wouldn't let me look in the mirror because septicaemia had caused my nose to be black and my eyelids. It was quite horrific. And even looking at my hands and legs, they were just black and the skin was peeling."
How common is meningococcal?
Invasive Meningococcal is relatively rare in Australia, though the number of cases has increased in recent years. In 2017, there were 382 reported nationally, up from 252 in 2016, Department of Health figures show.
Deaths from the disease have also risen, from 11 in 2016 to 28 last year.
The Department notes that the bacteria is spread via regular close, prolonged and intimate contact, which contributes to the disease's increased prevalence among infants and adolescents.
Once first symptoms begin, the disease progresses rapidly. Deterioration can occur within in a matter of hours, and that trademark rash is generally among the last symptoms to appear. Early intervention is crucial to ensure survival.
After waking from a coma, Sarah spent the next two months in ICU and a further two on the wards. And she's been in and out ever since.
She's undergone a total of 23 operations, including the amputation of fingers and toes, the removal of her spleen, gall bladder and 80 per cent of her large bowel, leaving with her a stoma bag.
She's also suffered multiple infections, the most substantial of which resulted in kidney failure, meaning she requires dialysis twice a week to stay alive and will ultimately require a kidney transplant.
A year ago, the trauma overwhelmed her. She told her family she didn't want to be here anymore, to keep struggling.
"It was really hard. After my major bowel surgery, I decided that I wanted to stop dialysis - the only thing that's keeping me going and healthy," she said. "I didn't want to fight anymore because I couldn't see any future. That was quite upsetting not for me but to do that to my family also."
But through the support and love of her parents, without whom she would have had to go into a care facility, she pushed on.
She began sharing her experience though her work with The Violet Foundation and on a dedicated Facebook page (Sarah's Recovery), in the hope of warning others and educating them about the importance of immunisation - for both adults and children.
Vaccinations are available for all five strains of the disease, and as of July 1 are free for adolescents under the National Immunisation Program. Awareness is key, Sarah says, and it's become her driving force.
"The more that I started sharing my story the more I realised, with the support that came even from complete strangers, that I can do things, that I'm not useless, there is a purpose there for me," she said.
"And if I can take a positive out of all the negatives that have happened, that's what I should I do. It's been almost two years since I was struck down and I'm still fighting a daily battle, but I find if I can help other people that helps me in my recovery as well.”