World Encephalitis Day focus: Liz’s story

It's World Encephalitis Day – but 8 out of 10 people across the world don’t know what encephalitis is.

We’re sharing stories this week to raise awareness of encephalitis, inflammation of the brain. Yesterday we heard Millie’s story, who was 18-months-old when she had encephalitis. Today we’re hearing from Liz, who was in her early 20s when she was diagnosed. Below is a summary – you can read Liz’s full story here.

The beginning

Liz said: “To celebrate finishing my degree, my boyfriend and I decided to take a trip of a lifetime to Grenada in the Caribbean.  This is when my life would change forever…” Liz’s behaviour and health changed on her return from the Caribbean. She said: “I started to portray some strange behaviours. I went through stages of uncontrollably crying for no particular reason, then laughing hysterically when nothing funny was happening. “I became confused and vague, and answered every question with “I don’t know!” I was forgetting to take care of myself and didn’t wash for days, I would become blank behind the eyes like there were no lights on upstairs. I was suffering from insomnia and couldn’t seem to sleep at all. “Then it started to get really strange; I was seeing faces in corners, hearing voices that weren’t there and smelling aromas that didn’t fit. It wasn’t long after this that I had my first seizure… this was to be the first of over 200 in the next six months. “Maybe it was just stress? I had recently just taken my finals… maybe that was it? Maybe I was on drugs? I was acting like a druggie…maybe that was it? BUT what about the seizure? Surely this meant that there was something else going on?”

Hospital – tests and treatments

In hospital Liz had many tests and spent time on the stroke unit as the seizures and other symptoms continued. She tried to escape several times – but the day finally came when the results came back positive for anti NMDA-r Encephalitis. This meant Liz not only had inflammation of the brain but her body was producing antibodies (NMDA) that were attacking the brain and causing the swelling. Psychiatric symptoms continued and Liz’s body started to shut down. After a very severe seizure Liz was put in an induced coma, a tracheostomy was performed and she was placed on a life support system. Slowly Liz’s treatments, which included plasma exchanges, started to work and she began learning to speak. Ups and downs continued along the way but the next step was learning to write. Liz said: “When I awoke from my coma I was just like a baby and had to learn everything completely from scratch. I couldn’t write. I couldn’t talk. I couldn’t walk.” Walking was next and from then Liz made huge progress in her recovery. She said: “I learnt to start to do things on my own again; I took my first shower, cooked my first meal and even updated my status on facebook!”

Giving back ever since

Liz explained how she thinks about the path her life has taken: “I try to always look at the positives. After 14 weeks in an induced coma and six months in hospital of course my life had significantly changed. “I had changed physically, mentally and emotionally. In a physical sense I was different. I had lost a huge amount of weight, my hair was limp, I had a puffy steroid face and horrendous steroid acne (I had even managed to grow an inch from lying down for half a year!). “Mentally, coming to terms with what had happened was difficult. The hallucinations and delusions I had been having all seemed so real and it was hard to determine what was real and what was not. “Emotionally I only really had two choices. I could think about how terrible life was, what I had missed out on and how unlucky I was OR I could think about how amazing life is, what I had to look forward to and how lucky I was to be alive." “I chose the latter.” Liz has focused on giving back ever since, raising awareness and funds about encephalitis, particularly for The Encephalitis Society and The Eden Dora Trust.  She also has a blog, My broken brain. She said: “I can wake up happy every morning knowing that each day I try to make a difference in the world by supporting others. For me, it is integral to spend my time and efforts helping people to realise that there is always a positive to come out of any situation that life throws at you. “Bad things happen, it is what you make from them that makes you who you are.”

Read more about Liz’s story, and yesterday’s story from Millie in our Real Stories section.

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