Lily O'Connell, a 23-year-old university student from Sydney's inner east, first began to feel sick at work on Christmas Eve of 2017.
She felt flu-like symptoms creeping on, including a fever and a painful throat, which she attributed to working too hard around Christmas.
By Christmas Day O'Connell couldn't move due to her temperature and nausea and instead lay on the couch while her family had Christmas lunch. At around six on Christmas night she started vomiting and could not stop.
"By about 11pm my neck and back started hurting, but I thought that was a response to the jerking from throwing up...turns out the neck pain is a symptom of meningococcal," she told BuzzFeed News.
Her mother put her to bed on the sofa in the living room and came down 40 minutes later to check on her. In that time O'Connell had developed an aggressive purple rash on her face, groin, back, knees and elbows.
She was rushed to St Vincent's Hospital in Paddington.
"When I was in [emergency], I was really out of it, my blood pressure was so low that I was acting drunk almost. I couldn't control my movements or my behaviour and in ICU, I couldn't remember my first three days."
Lily was diagnosed with the W strain of meningococcal and spent three weeks in hospital recovering.
She suffered severe damage to her adrenal glands and kidneys as a result of the blood clots that formed and she will be receiving a kidney transplant from her sister within the next fortnight.
For the moment, Lily has to take daily steroids and spends five hours every two days on kidney dialysis.
Meningococcal is caused by an acute bacterial infection that can result in inflammation of the spinal chord and brain lining (meningitis) and blood poisoning (septicaemia).
It is spread by prolonged contact with a carrier and particularly saliva transfer, through sharing food, water, or kissing.
Meningococcal cases in Australia are still rare but they have been on the rise since 2013, with the number of cases last year being the highest since 2006.
Meningococcal killed a 38-year-old woman from the NSW Central Coast last week and it is suspected to have killed a teenager in Hobart last month.
While meningococcal C infections were effectively controlled after a vaccine for that strain was introduced to the National Immunisation Program (NIP) in 2003, the number of W strain cases have increased markedly in recent years.
There are five different serotypes (strains) of meningococcal disease in Australia: A, C, W, Y, and B.
The most common strains of meningococcal in Australia are currently B and W.
Reported W strain cases almost tripled from 2015 to 2016 from 34 cases to 108.
Dr Kate Seib, an infectious diseases researcher from Flinders University, told BuzzFeed News that meningococcal is found throughout the population and doesn't always cause disease.
"The bacteria can live happily in your nose or throat and it only really becomes a problem if it becomes invasive," said Seib.
"It's found in up to about 10 or 20% of the population and it won't ever cause any problems, but sometimes because the person is immune-compromised or because there's a particularly nasty strain going around...that's when it will cause disease."
The early symptoms are very much like a flu but it can be distinguished by sensitivity to light, painful neck cramps, or the distinctive bruise-like rash caused by bleeding into the skin.
Meningococcal can cause death within hours if it is not recognised or treated quickly enough.
The age groups most at risk of meningococcal infection are babies from zero to five years old and adolescents aged from 15 to 24.
In Australia, under the National Immunisation Program, babies are scheduled for a free quadrivalent vaccine that covers the A, C, W, and Y strains of meningococcal at 12 months old.
However, vaccines only typically last for five to 10 years.
While most states and territories (except for South Australia) have instituted the quadrivalent vaccination booster program for all high school age students, it has not yet been included in the National Immunisation Program.
Eliza Ault-Connell, a director of Meningococcal Australia and Olympic athlete who has survived meningococcal herself, told BuzzFeed News she believes there needs to be a comprehensive national vaccination program.
"We need a federal approach because disease – as you can imagine – doesn't know state boundaries and we need to have a consistent approach to vaccination," she said.
The quadrivalent vaccine does not account for meningococcal B.
The vaccine for this strain was only approved for use in Australia in 2013 and the United Kingdom became the first nation globally to introduce it into its vaccination schedule in 2015.
South Australia is trialling Australia's first meningococcal B vaccine program for babies from October this year, which will then be extended to high schoolers next year.
In other states and territories, you can opt to pay for the meningococcal B vaccine, which costs approximately $150 out-of-pocket.
So, should people in the 15- to 24-year-old bracket pay for the quadrivalent or meningococcal B vaccine if it isn't provided by their state or territory government?
Ault-Connell believes the expense is absolutely worth the money.
"Unfortunately, yes, vaccines when you're privately funding them do come at a cost. The meningococcal B vaccines are slightly more expensive than the meningococcal A, C, W, and Y vaccine ... [but] can you put a price on your life?
"I speak to families every single day that just say 'If we had known that my child or my adolescent, if I knew they weren't protected, we would have paid for the vaccination, but we just didn't know.' And that is what we need to change."
O'Connell believes there needs to be wider understanding of meningococcal, particularly amongst young adults.
"I think there needs to be more education on the matter; I knew nothing about it. I thought that the vaccinations I got in school were enough, they definitely weren't."
You can find all of the relevant information for meningococcal vaccination programs here.