Encephalitis Information Week begins
Held between 18 and 25 October 2021, the initiative aims to share resources with hospital staff and GPs to help treat and manage patients recovering from the neurological condition, many of whom are left with permanent brain injury and a legacy of difficulties.
Typically caused by common viruses including the new coronavirus, flu, measles and herpes simplex virus, or by bacterial infections or autoimmune diseases, encephalitis, while recognised for its severity within the Australian medical community, is lacking in guides and resources for people living with the condition.
Around 500,000 people globally are affected by encephalitis annually, equating to one person every minute.
While the severity and symptoms of encephalitis can vary, they include flu‐like illness, headache, drowsiness, uncharacteristic behaviour, inability to speak or control movement and seizures.
Dr Ava Easton, Chief Executive of the Encephalitis Society, said, “One of the things we regularly hear from our Australian members is that they can struggle to access information about encephalitis after leaving hospital.
“They are often left with many questions, feel lost and overwhelmed and are unsure as to how to manage personal, social, work and educational integration following their diagnosis,” Dr Easton said.
“The hope with Encephalitis Information Week is to get our resources into the hands of health professionals who can pass them onto patients recovering from encephalitis.
“We want patients and their carers to know that they are not alone, that they can regain their lives after encephalitis, and that there is peer-reviewed information and support to help to improve the lives of survivors,” Dr Easton said.
Following encephalitis, many patients are left with cognitive, physical or emotional difficulties including impaired memory, language problems, changes in decision-making, planning and organisation, personality changes, anxiety, depression, mood swings, fatigue, weakness, epilepsy and much more.
Encephalitis Information Week’s campaign website includes information for healthcare professionals, including hospital staff and GPs, guides about encephalitis in adults and children, advice for teachers, employees and carers, and factsheets covering recovery and rehabilitation and other aspects such as fatigue, depression and memory problems.
There are also links to organisations within Australia that can help and details about how people can connect with others who are in recovery.
Rachael Schwarz, a Perth-based volunteer with the Encephalitis Society, who was diagnosed with herpes simplex encephalitis in early 2019, is one of the Australian support team members spearheading the campaign.
“Falling ill with encephalitis was a scary, debilitating and very uncertain time for me and my family,” Rachael said.
“The treatment I received in hospital was fantastic, but I was still left with a feeling of fear and loneliness when I returned home.
“I wanted and needed to know more about what lay ahead for me and my recovery from encephalitis,” Rachael said.
“The Encephalitis Society was an amazing resource for me and my family during that extremely difficult first year and has helped me to connect with others in Australia who have become a mutual support network as we continue our recoveries.
“Encephalitis Information Week is our chance to help others who may come to experience these same feelings when they are beginning a life after encephalitis,” Rachael said.
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