What is Autoimmune Encephalitis? The rare brain disease that forced Aussie athlete Tiana Death to relearn how to walk, talk and write
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How rare is Autoimmune Encephalitis?
Diagnosis and recovery
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Former Australian athletics champion Tiana Death (pronounced Dee-arthe) has publicly shared her diagnosis of a rare neurological condition autoimmune encephalitis , two years after she collapsed at home during a major seizure.The 24-year-old, Sydney athlete who won bronze in the 100m hurdles at the 2017 national championships and competed in the 2018 Youth Commonwealth Games, detailed her story on Instagram last month. She described how her life changed suddenly in 2023 when she was found unconscious in her room and rushed to intensive care.She told Daily Mail that at the time of her collapse, she had been experiencing fatigue, headaches, and flu-like symptoms. She later began having seizures and lost the ability to walk, talk, or open her eyes. Initially, doctors believed a virus may have triggered the symptoms.Her condition was so severe that doctors considered placing her in an induced coma. During her hospital stay, Death says she didn't recognize her father and experienced severe memory loss.Autoimmune encephalitis is a rare disorder where the immune system mistakenly attacks the brain, leading to inflammation, seizures, memory loss, and other neurological issues. Treatment includes high-dose steroids and intravenous immunoglobulin (IVIG) therapy to suppress the immune response.Death began receiving monthly IVIG infusions, using plasma from healthy donors, which helped her regain some functions.She was discharged from the hospital in February and had to relearn basic tasks like walking, talking, and writing.Autoimmune encephalitis is a rare but recognized neurological condition, with an estimated incidence of about 1 to 2 cases per 100,000 people per year. Though it can affect people of any age, it is more commonly diagnosed in children, adolescents, and young adults.The tricky part of being with the illness is that it is often misdiagnosed early on due to its similarity to viral encephalitis or psychiatric disorders, but awareness is growing.It wasn't until June this year that doctors officially diagnosed her with autoimmune encephalitis. By then, she had already spent months trying to manage her seizures with epilepsy medication.Her recovery journey has included significant physical and emotional challenges.She has returned to living independently but continues to manage her lifelong illness with regular treatments and medical support.
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