Aussie champ shares nightmare diagnosis for the first time
The 24-year-old last month went public with the 'full story' of her ordeal with Instagram followers after a terrifying, life-threatening nightmare.
The Sydneysider's social media profiles show a life of glitz and glamour in the Harbour City, but she has now revealed she has been battling auto-immune encephalitis.
The rare condition — which is categorised bluntly as her immune system attacking her own brain — was only made in June. The diagnosis arrived two years after the day where 'everything changed'.
Death, who represented Australia at the 2018 Youth Commonwealth Games in the 100m hurdles, told her Instagram followers the illness came from completely out of the blue.
The Kellyville teenager, a member of the talented Athletics Australia under-19 squad, won the bronze medal at the 2017 national championships to book her spot for the Games in the Bahamas.
The Barker College product and fellow Aussie Lateisha Willis both qualified for the 100m hurdle final at the event.
She was also crowned champion at 2017 NSW Junior and Youth Championships at Sydney Olympic Park.
'I have never shared my full story so here so here it is,' Death — whose name is pronounced 'Deeth' — wrote on July 4.
'2023 I started feeling flu-like symptoms fatigue, terrible headaches, just not quite myself. I went to the GP, but all my test results came back normal. That same day was a special one my younger brother's first day of high school.
'What should have been a normal morning turned into something no one could have imagined.
'I was found unconscious. I'd been seizing throughout the night, alone in my room. The next thing I knew, I was in the (Intensive Care unit) ICU totally out of it and having constant seizures. I couldn't talk, couldn't walk, couldn't even keep my eyes open. My body was shutting down.'
She has told The Daily Mail her condition was so serious that doctors considered putting her in an induced coma while they tried to find a solution.
She said in the fog of her time in the ICU she could not even recognise her own dad.
'I thought I was losing my mind, literally,' she said.
A precise diagnosis remained elusive with doctors acting on assessment that her seizures and epileptic episodes were likely the result of a virus.
Despite the uncertainty, her condition improved significantly thanks to a treatment plan that included different forms of epilepsy medication and intravenous immunoglobulin (IVIG plasma infusion) procedures.
IVIG involves infusing antibodies from healthy blood donors to help regulate an overactive immune system. It is similar to medications some patients use following transplant surgeries to suppress the immune system.
In cases of auto-immune encephalitis, it's used to neutralise the harmful antibodies attacking the brain, aiming to reduce inflammation and restore neurological function.
In February she was cleared to be discharged from hospital care.
'I walked out thinking I just had to take a whole lot of medication but everything had changed I had to relearn how to talk, walk, and even write,' she wrote on Instagram.
'When I got home I started realising I had lost so much memory. I couldn't remember things from three years before the first seizure.
'Whole chunks of my life were just gone friends would show me pictures from trips or parties, tell me stories about nights we'd shared.'
According to a gofundme page dedicated to supporting her ongoing medical battle,
it was only in June, after doctors had begun reducing her medication doses, that she finally got answers.
'Just four weeks ago they finally had a plan to slowly reduce my medications,' she posted last month.
'It turns out the reason I've been having constant seizures, even with all the medication, is because I have a condition called auto-immune encephalitis.
'It's where your immune system mistakenly attacks your brain, causing inflammation and for me, seizures.
'I'm on high-dose steroids and receive monthly IVIG treatments (plasma from donors) to suppress my immune system.
'This will likely be a lifelong journey, not just for the auto-immune disease.
'It's a hard card to be dealt, and it's taken a toll on every part of my life. But through it all, I've realised how much you truly need your support system friends, family, the people who show up even when things get messy.
'If I can leave you with one thing yes, it's cliche but it's true live each day like it's your last. You really don't know what's around the corner.'
She has a close support network of friends and family, but admits there have been 'low' moments where she has found it difficult to get out of bed.
There was a period where she was unable to work for six months and was forced to return to live in her family home.
The new treatment plan has given back some of her old life and she has moved in with a friend on Sydney's Northern Beaches.
However, the realities of managing a lifelong illness are still very present.
It's why her family has established the gofundme campaign to raise $15,000 to help her cover ongoing medical costs, including IVIG infusions, specialist consultations, scans, medications, and other ongoing healthcare needs.
'Tiana cleared hurdles on the track with strength and grace — and now, with a little help from those around her, we're determined to help her get over this next one,' campaign organiser Gin Eastop wrote.
'If you're able to contribute, no matter the amount, your support means the world. And if now's not the right time to donate, simply sharing Tiana's story can still make a huge difference.'
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