Sarah Williams, aged 9, during her stay in hospital, when she contracted viral encephalitis. Photo / Sarah Williams
An East Auckland woman has shared a stark warning about one of the possible complications of measles after she suffered from encephalitis when she was young.
In 1990, Sarah Williams came down with viral encephalitis, which caused swelling of the brain and a range of other potentially life-threatening symptoms, when she was 9 years old and living in Palmerston North.
She believes that she got the virus after having a cold sore - making it herpes simplex encephalitis.
However, the virus is also a known complication of measles, with approximately 1 in 1000 cases developing encephalitis. From these cases, 15 per cent die and approximately one third are left with permanent brain damage.
After seeing the increases of measles cases in New Zealand (963 cases across the country and 804 in Auckland alone) the 38-year-old solo mother and English teacher has decided to share her horror ordeal.
"Encephalitis is a very real potential consequence of measles and I wouldn't want anyone to go through such a horrible, potentially fatal illness that is preventable," Williams said.
"I have read stories of people who had encephalitis from measles and the symptoms and experiences are the same.
"The differences are based on the extent of inflammation and parts of the brain affected. For me, it was the temporal lobe.
"Measles is just one of the possible causes of encephalitis around the world, but measles is entirely preventable with vaccination, unlike some of the other causes."
Williams doesn't remember much about what happened, but has recalled her story from her parents.
It all began when she was 9 years old and her parents reluctantly dropped her off at her first school camp.
"I had been a bit under the weather so they told the teacher to call if I didn't seem right.
"Despite the fact I was falling asleep constantly and that a couple of parents were concerned, she didn't call.
"Fast forward to the camp concert, where my parents arrived and greeted me. I replied, 'Who are you?'"
After returning home, Williams was taken to her GP who had luckily seen a similar case before and sent her to the Palmerston North hospital's paediatric ward.
William believes that the hospital had never treated a child with an encephalitis case before and revealed the symptoms she went through at the time, including seizures and hallucinations.
"My brain was swelling up against my skull. I was having seizures so regularly the nurses knew when the next one was due, and learnt quickly I did not come out of the seizures without medical intervention.
"When I had the seizures I bit into my lip. I still have a scar on the inside of my lip that I can feel with my tongue.
"They had to put me on a mattress on the floor as I'd fall off the bed because of the seizures. One of my parents was always with me on another mattress on the floor.
"I had hallucinations ranging from the amusing, like seeing a money tree and trying to grab the money off it, to the disturbing and heartbreaking, like one where I thought I was on fire and screamed that if they loved me they would put the fire out."
She said the doctors didn't think she would survive the illness and believed she would be severely brain damaged and wouldn't live a normal life.
"They wanted to put me in an induced coma and believed I would die," she said.
"My parents wouldn't give up on me. I was known to be a kid who didn't give up either."
However, after three weeks, Williams was starting to get better.
"One day I looked at my mum and commented she wasn't wearing makeup and looked terrible. That was when she knew I was getting better. I was back," she said.
Williams revealed it was a rough time for her family and friends, but her community was supportive and prayed for her to get well.
"Thankfully, I did, but it did involve a period of rehabilitation and recovery," she said.
"I had to learn how to walk properly again, and do other simple things like how to use a knife and fork and peel a banana."
She was also left with epilepsy and had to find the right medication and dosage to control the seizures. Williams was seizure-free for 23 years, but later had mild seizures for 7 years that weren't diagnosed at that time.
"I had a huge seizure in 2012 that lasted up to about an hour. I now take two medications and I'm seizure-free again for the time being," she said.
She also had to overcome memory and speech issues.
"I had crazy emotional mood swings due to the wiring in my brain being all muddled up," Williams said.
"My memory isn't always the greatest, I struggle with organisation, and I have battled with depression and anxiety, which I have been told could be a result of scar tissue on the brain.
"Overall, I live a pretty normal life and I am one of the lucky ones. I survived.
"Some survivors experience worse long-term effects, so I am grateful. The effects vary from person to person depending on the parts of the brain that are damaged."
Williams has been an English teacher since 2007. From 2014 she has mainly been relief teaching as she gets overwhelmed easily by stress and the heavy workload.
"Having a seizure again in 2012 made me realise how important my health is," she said.
Symptoms of encephalitis include:
Fever, headaches, nausea and vomiting, feeling generally unwell, drowsiness and confusion, memory and speech problems, and seizures. Also loss of consciousness and coma.