Sarah Joyce is only 31 but most other people who’ve been through what she’s experienced wouldn’t be alive today.
In August 2016 the central coast resident was diagnosed with meningococcal disease and within 12 hours of contracting the first symptoms, she was put on life support.
After being in a coma for eight days her family and loved ones were told to say goodbye.
But then a miracle happened.
“When I woke up but I couldn’t move my body. My muscles were eaten away and the purple rash was all over me. It made my skin feel like leather and it began peeling off because it was dead. I had to get the skin removed in surgery. I was just lucky they didn’t have to amputate any limbs, but I did have two fingers and five toes removed,” she said.
“At the time everything just happened so quickly. I was upset, but I knew it had to be done.”
She said since contracting the disease, her life almost ended three times.
I thought ‘I’m still here for a reason’ and that’s when I became involved in the Violet Foundation.
“The thing which made my case fatal was I also had septicemia – blood poisoning. It was a double whammy. Most people who get both don’t survive. My entire body starting shutting down and my kidneys never recovered so I need a kidney transplant now but I’m not well enough to get it yet. Hopefully I’ll be put on the list soon.
“I think the worst stage was when I was told I needed to have my bowel removed. I was in hospital for three months because of that and I’d just given up at that stage. But I thought ‘I’m still here for a reason’ and that’s when I became involved in the Violet Foundation.
“I’ve had 18 surgeries and I’ve lost my gall bladder, spleen and large bowel so I ended with an ileostomy bag. Now I’m on dialysis three days a week. I’d die without it. That’s what’s keeping me alive at the moment until I get a transplant.”
I wasn’t vaccinated for any of the meningococcal strains because I didn’t think it would happen to me and I didn’t know much about it.
It was her family’s unrelenting support and love that helped her get through the most challenging time of her life.
“My Dad slept on the hospital floor next to me when I was on life support and he stayed every night when I was in intensive care. He wouldn’t leave me. My mum and sister were there all the time as well. I was never left on my own. They were wonderful.”
Sarah was recently made director of The Violet Doundation based at Moorebank. She said despite her own health problems, she makes time to help other victims and educate people about meningococcal.
“The foundation made me feel like I had purpose again. I wasn’t vaccinated for any of the meningococcal strains because I didn’t think it would happen to me and I didn’t know much about it.
“That’s why I think it’s important to raise awareness. It can affect anyone at any age and that’s the message we’re tying to promote at the moment. There are five strains in Australia but they’re not all covered by the Government.
I had the W strain – which is on the rise at the moment and it’s a big concern because most people aren’t vaccinated for that.
“My opinion is I believe in vaccinations because it’s saved lives and if you’ve looked at the cases of children affected by it, it’s just awful. Vaccinations would have saved their lives. I think think that would outweigh any cons, personally.”
The Violet Foundation is encouraging Liverpool residents to be vaccinated.
“If you look at some diseases that aren’t around anymore like polio, it’s because of vaccinations. I had the W strain – which is on the rise at the moment and it’s a big concern because most people aren’t vaccinated for that.”
The Australian Medical Association NSW president Brad Frankumagreed with Sarah.
“We’ve seen increasing cases in the W strain and the vaccine is not on the National Immunisation Program and it’s quite expensive. It’s my understanding it’s funded for certain groups.
“The medical science behind vaccinations and the facts completely support vaccination. I understand a lot of people can’t afford it and, yes, it’s a rare condition but we have outbreaks all over Australia.”
A new clone of the W strain has emerged which affects young children, older teenagers and older adults.
University of Sydney Professor Robert Booy said in the last three years the annual number of cases in Australia has doubled.
“Its become more common all over Australia and therefore the focus is to introduce vaccinations on a state and federal level. A new clone of the W strain has emerged which affects young children, older teenagers and older adults. WA just introduced free vaccinations for children 1 to 5 for the W strain and, hopefully, other states will follow.
“The risk of dying from this disease is 5 to 10 per cent and the risk is higher if you’re very young or over 65. Of the people who survive, 20 to 30 per cent can be left with major long-term complications like scarring, amputation, deafness and memory problems. The best way to prevent this is through vaccination which is safe, effective and licensed.”
The rate of meningococcal disease in the South Western Sydney Local Health District is the same as the NSW average, with 1.2 cases per 100,000 people.
South Western Sydney Public Health Unit were notified about 13 cases of meningococcal disease last year, all of which required hospitalisation.
The district’s acting director of public health Kate Alexander said: “The rate of meningococcal disease in the South Western Sydney Local Health District is the same as the NSW average, with 1.2 cases per 100,000 people.
“Childhood immunisation is primarily a Commonwealth Government responsibility, however in 2017 the NSW Government delivered a statewide $9 million immunisation program to combat a rise in the W strain of meningococcal disease.
A single dose of this vaccine provides effective protection against all four strains for at least five years.
“The NSW Meningococcal W Response Program provided years 11 and 12 students across the state with free vaccines that protect against four strains of meningococcal disease, A, C, W and Y. A single dose of this vaccine provides effective protection against all four strains for at least five years. This age group has been targeted as teenagers are very socially active and therefore most vulnerable to infection at this stage of their lives.”
Babies aged 12 months are also eligible for a free vaccine against the C strain through the Commonwealth Government’s National Immunisation Program.
And vaccinations against the B strain are available but not currently funded through the Commonwealth Government’s National Immunisation Program.
Taken from http://www.liverpoolchampion.com.au/story/5189630/sarah-says-get-vaccinated/?cs=1843 by Madelaine Wong
A MUCH-anticipated vaccine to prevent meningococcal B infection is waiting TGA approval after being given the go-ahead by European health authorities.
“It is the holy grail. It is the last big cause of meningitis and blood poisoning,” said Professor Robert Booy, head of clinical research at the National Centre for Immunisation Research and Surveillance, Sydney.
The vaccine, called Bexsero (Novartis), has been approved by the European Commission for use in infants from two months.
The European Medicines Agency said it was the first vaccine to provide broad coverage against meningococcal group B strains.
The sponsor confirmed the vaccine was under review by the TGA.
“We hope that we will in time see a similar registration in Australia,” a Novartis spokesperson said.
The company said Bexsero would complement vaccines that protect against the other main serotypes of meningococcal disease.
Professor Booy said it could be given at any age after two months but for a public health program it wouldn’t be possible to vaccinate everyone.
He suggested it could be implemented in a similar way to the meningococcal C vaccine in 2003, with toddlers and teenagers targeted initially.
“I think governments will be interested,” Professor Booy said. “I am sure it will be considered carefully at federal level for funding.
“It is certainly possible that Australia will be one of the first few countries to introduce it. That is my guess, my prediction.”
Professor Booy said meningococcal B meningitis was rare and affected 200–300 people a year in Australia, mostly children and teenagers.
Health department figures show a total of 222 cases of invasive meningococcal disease were reported in 2012.
Studies suggest mortality from the B strains is 5–10%.
“My data is nearer 5%,” Professor Booy said. “We’ve improved the medical care but in terms of the complication rate it is still 20%.
“That includes deafness, severe scarring, psychological problems, depression, amputation and hearing loss.”
Taken from http://www.medicalobserver.com.au/news/meningococcal-b-vaccine-under-tga-review – By Niamh Mullen
24th Jan 2013