Woman almost killed by cold sore
Most people will look back on 2020 and remember it as a year defined by the discovery of an unknown disease, the race to learn more about it, and - for some - dealing with a slate of side effects long after their diagnosis.
Nobody knows this better, perhaps, than renowned ABC sports broadcaster Karen Tighe - though the last 12 months for her have been defined not by COVID-19, but herpes simplex (cold sore virus) encephalitis - an illness she knew nothing about until she contracted it last March.
Typically caused by common viruses - including coronavirus, the flu and measles - encephalitis is a life-threatening inflammation of the brain that can lead to permanent neurological injury.
At the time of her diagnosis, the award-winning broadcaster was given a 30 per cent chance of dying. Throughout her recovery, she's battled a legacy of difficulties, including intense anxiety, daily nausea, hair loss and an inability to remember the names of top sportsmen and women - even the Prime Minister and West Australian Premier - that once rolled off her tongue with ease.
In late February, Tighe was doing ABC Radio's Summer Grandstand programming when she began feeling tired, achy and generally "a bit yucky", she told news.com.au.
"I thought I was just coming down with something, that it was busy at work, and if I was still feeling a bit yucky at the end of the week I'd go to the doctor," Tighe recalled.
By the time the weekend rolled around, she was feeling so depleted that the most energy she could muster was to leave the studio and "gently" make her way home, where she then lay on the couch for the next two days.
Generally a healthy person, come Wednesday Tighe couldn't even get out of bed to go to a doctor's appointment. A locum came to see her at home, and that's when it became clear something wasn't right.
"I remember him arriving, and he did a few basic tests. And this I don't remember - he asked me things like my address and my date of birth and apparently I couldn't tell him those things," she said.
"And then so he turned to my husband (fellow broadcaster Glenn Mitchell) and said, 'We need to get Karen into the hospital.'"
The first two to three days of her time at Perth's Sir Charles Gairdner Hospital are "like a blank out".
"They did all this testing, and Glenn said the biggest thing was initially, he was there and leant over to give me a kiss on the forehead and I just went - I put my hand up and said, 'What are you doing?' And he said, 'Oh, I just wanted to give you a kiss,' and I said, 'Who are you?'" Tighe said.
"I didn't know who he was and I didn't know that we had a son and Glenn just said, 'Oh my goodness.' But then once they got the right sort of treatments into me, those names and stuff like that kind of came back."
Tighe spent two weeks in hospital - after which a nurse would come to the house every day and replace her medication on a drip - and the next month sleeping "a lot" and giving her brain the rest it so desperately needed.
And while six weeks after her diagnosis Tighe could feel her body starting to improve and she could make it outside again for a short walk, almost a year later she's still dealing with "all these other sorts of side symptoms".
"Nausea for months and months and months - daily nausea that would come and go, come and go every day - and losing chunks of hair for about a two-month period," Tighe said.
"And then in late July, August, I think went through intense anxiety … I didn't want to be in my house on my own, even in the day time. I was scared that somebody was going to come and do something, and the night time I was terrified about."
Thankfully, the daily nausea episodes have now ceased, and Tighe is on a low-dose medication to combat the anxiety. Physically, she said, she's feeling "so much better".
Now comes the task of "gently improving my brain".
"The main reason I'm not able to go back to my radio work yet is I still have so many names - they're like behind a closed door in my brain," she said.
"So many sporting names that would usually just come off the tip of my tongue, I can't access their names. I can recognise them written down, I can recognise them visually, but their names all feel like they're hidden behind a door."
Another reason why the last month has been "a big step forward" for Tighe is meeting another encephalitis survivor, Rachael Schwarz, in Perth - just in time for World Encephalitis Day, which is today, February 22.
"For both of us, as much as our families have been so amazing, and work as well, very supportive and caring, you know if you can speak to someone who knows exactly what you're feeling like, it's lovely," Tighe said of meeting Rachael.
Eight out of 10 people have not heard of encephalitis, Encephalitis Society chief executive, Dr Ava Easton, told news.com.au, even though it "has a higher incidence in many countries than many other conditions that the general public are more familiar with".
"What Karen has gone through could happen to anyone regardless of age, gender or ethnicity," Dr Easton explained.
"While there are many causes of encephalitis that we can't prevent, like herpes simplex (the cold sore virus) as in Karen's case; there are some causes which are vaccine-preventable like measles, and now COVID-19.
"So we are raising awareness of encephalitis and urging people to seek out reliable information and become vaccine confident to save unnecessary death, disease and suffering."
Tighe, who hopes to get back to broadcasting after the football season - just in time for Summer Grandstand in October, she also hopes to help build an encephalitis support network here in Australia.
"If there's one person or one family out there that read this and go, 'Oh my God, this is what I'm going through and I feel alone because nobody knows what encephalitis is' or 'I've never met someone else who has something familiar that can identify with me', well, I'd be so happy to chat with them," she said.
"If there's a way of even just reaching one person that has it and thinks they're alone, I just want them to know that they're not."
Originally published as Woman almost killed by cold sore