Encephalitis - Rachael's Story

6 January 2023

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I was diagnosed with Herpes Simplex Encephalitis in January 2019 while our family was travelling overseas. My initial symptoms were an upset stomach, exhaustion, nausea, and headaches. I was travelling and thought it was just something that could happen with a change of scene and season.

Unwell for a couple of days, I still managed to do some hiking midweek and over the weekend stayed with friends. But, by the Saturday afternoon, I started saying things that made no sense whatsoever - and that’s the last thing I remember until I woke up in hospital about a week later.

Once discharged, I had major issues: a change in taste, severe headaches, no appetite, epilepsy which occurred as the encephalitis was progressing, exhaustion, memory issues and an inability to function at even a minor level.

My story is long and complicated, and I encountered many challenges, wondering if I would ever be able to communicate, drive, work, or function normally at any level.

Without family, friends and colleagues helping and encouraging me to get back on my feet - and some self-motivation - I don’t know where I would be.

This is my story, and I am a lucky one. I am mostly back to functioning the way I used to and from the outside, many would not realise that I suffered from a severe brain illness.

However, my journey to return to my former self is still underway and many who have suffered from encephalitis do not make it back to any form of “normality”.

Lack of early diagnosis

Most of the encephalitis survivors who I have met and spoken with, tell me that nobody they know had heard of encephalitis until they were diagnosed. It’s an uncommon disease and can be misdiagnosed until a patient reaches a critical level.

In my case, I was fortunate that encephalitis was suspected, and I was placed on antiviral medication soon after arrival in hospital. Following a lumbar puncture a few days later, this suspected diagnosis was confirmed.

An encephalitis survivor I met and who is now a friend, was not diagnosed until three weeks after her initial symptoms and the antiviral drugs were unable to be administered to her. She now has problems stringing a sentence together if she is too tired, suffers from fatigue, deals with depression and is nowhere near functioning at her previous level. This is just one person who is challenged every day.

There are many others who don’t function as they used to and have lost the ability to hear, see, walk, talk, and remember. Not only them but their families, friends and colleagues have all been affected.

World Encephalitis Day #WED 2023

World Encephalitis Day takes place on 22 February every year.

Two years ago, I contacted The Encephalitis Society which is based in the UK about taking part. The result? A get together in Perth with encephalitis survivors I had met, plus family and friends. We also arranged for some of Perth's most iconic buildings to be lit up in red, the colour of Encephalitis Day, including where we met outside Optus Stadium and the Matagarup Bridge (see pictures below).

My friends posted on social media in red with the hashtag #Red4WED. We repeated this last year.

This year is the 10th anniversary of World Encephalitis Day and we have around 20 landmarks lighting up for us. See more at: https://www.encephalitis.info/wed-landmark

From 6.30pm we will be doing a get together again outside Optus Stadium for survivors, families, and friends to watch the sunset and see Perth light up to raise awareness regarding many aspects of encephalitis.

Anyone who wishes to come and help us raise awareness of encephalitis and to support those of us who have lived through encephalitis, whether they be survivors, families, friends, colleagues, or professionals, is very welcome. Please contact me through the Neurological Council at hello@ncwa.com.au or phone 6457 7533.

Encephalitis support groups

I met my first friend who had had encephalitis (Karen Tighe ABC Sport) following a newspaper article and managed to contact her through a work colleague. We met for a coffee at a café we both couldn’t remember the name of…. and we talked and talked for about three hours until they told us we had to leave! We still get together often, bounce off each other and are in touch every few days.

Through word of mouth and the Encephalitis Society (the only organisation in the world and based in the UK) we have now managed to meet more people and there are about 10 of us in Perth who get together. We have had a few coffee mornings and I look forward to keeping these going as we all move forward sharing our new pathways.

If you know anyone who has had encephalitis and just wants to know someone else who can relate to them, we would love them to join our group. Please contact me through the Neurological Council at hello@ncwa.com.au or phone 6457 7533.

What can the medical industry do and how can people move forward?

Moving forward, I would like to see how we can work towards helping others and raise awareness of encephalitis to improve diagnosis and provide support and guidance for recovery after discharge from hospital, so people who have suffered can talk, and reach the people and organisations they need to for counselling and rehabilitation.

My luck (and sometimes I feel it really is luck) came through my reasonably early diagnosis, who I saw and when I saw them, and the amazing personal support I have had from everyone around me, my family, my friends, my colleagues and so many others who have invested their time in helping.

This motivates me to keep going and to try and get more support out there for others who have had this debilitating and overwhelming disease.

With thanks to Rachael Schwarz for sharing her story.
For more information please contact the Neurological Council of WA.