Fighting a silent killer (The Encephalitis Society)

Member Name: DancingCopper

Product:	The Encephalitis Society
Date:	11/11/08 (287 review reads)
Rating:

Advantages: Stopped someone I care about dying

Disadvantages: They're small and people don't know about them

This piece is divided into three sections: a short introduction, background to my experiences with Encephalitis, the Encephalitis Society itself. Thank you for reading my review, and feel free to jump to the details of the Society if you want to.

---------- Introduction ----------

I didn't know what Encephalitis was. I knew it was some kind of disease, only because I'd heard it in one of Monty Python's surreal songs, but that was all. You don't need to know much about it to know it's a pretty horrible thing. Type 'Encephalitis' into Wikipedia and the first line you get is, 'Encephalitis is an acute inflammation of the brain'. We're talking life and death stuff here.

It's unlikely you would know what Encephalitis is unless you had experience of it yourself, or through someone close to you, but I guarantee you won't forget it afterwards.

---------- Personal Experience ----------

Here's my story:

Several years ago, I was in the final stages of rehearsing a play when I received a phone call. I knew something was up, the voice sounded tired and worried. Someone very close to me, Karen, had collapsed and been taken to hospital. I knew she had been unwell. She'd had a cold for what seemed like far too long. In an instant I decided to quit the show. I'd be letting down the cast, but that was not important. The voice on the phone persuaded me against this, saying I couldn't do anything and Karen would get the best help in hospital.

So I stuck with the show and tried to be funny every night for a week. I phoned daily for updates and kept getting the same answers. The doctors were running tests, they had stabilised the condition but could not treat the symptoms until they'd identified what it was. Karen was on a ward, and was mobile, but her personality was not there. She did not speak to anyone, barely recognised her family, and seemed to spend most of her time looking out of the window.

By the time I was able to head back, the doctors had identified Karen's condition as Encephalitis and had begun treating her. When I arrived I saw she had lost a lot of weight but was getting better. She was more lucid, but definitely not back to her old self. In total, I think she was in hospital for about three weeks.

Recovery took much, much longer. Over the next two years, Karen was gradually able to leave her house, although it took a very long time to walk anywhere. After two years, she was able to retake her driving test - because she had fitted whilst having a lumbar-puncture, this was the earliest she was legally and medically deemed fit to drive. It took another two years before Karen felt well enough to board an aeroplane. Even now, after a decade, loud noises and flashing lights have a more pronounced effect on Karen than they did before. And when she gets the symptoms of a cold, I still get that horrible, knotty feeling in my stomach.

---------- The Encephalitis Society ----------

The Society was set up in 1994 as a mutual support group. Many other people had found, as we had, that information was scarce on Encephalitis. There was not a great deal in circulation detailing the symptoms, the statistics or people who could help. The Encephalitis Society's main aim is to educate and inform people, so they can recognise what could be Encephalitis.

The society's website - www.encephalitis.info - provides excellent, easy-to-read resources on all aspects of Encephalitis. The facts that shocked me the most were how many different varieties of this disease there are, the fact we are all at risk, and the fatality levels.

If you look at nothing else look at this link for an insight into the disease:
www.encephalitis.info/images/iPdf/Resources/FactS heets/fs001QuestionsAnswers.pdf

Ten percent of people suffering from Encephalitis die. Some forms of encephalitis are more severe, including Karen's strain, herpes simplex virus encephalitis, in which mortality is up to 30% with treatment, and 70-80% without. That terrifies me still and makes the work of the Society so important.

The other important role the society serves is a way for sufferers and their families can contact each other. I know Karen has found their support invaluable, and since recovering has helped others work through the slow process of healing.

Membership of the society is free and they produce three newsletters each year, also available on the website. They give advice about different ways of donating to the Society. I would say, given their size, they can be obscured by larger charities. They were incredibly grateful when I approached them saying I was running the London and Edinburgh marathons for them. They phoned me and emailed me regularly, seeing how I was.

The service felt much more intimate then I think a larger charity would have given. This is true of the way they work with people recovering from Encephalitis and their families: quietly, patiently, and with determination.

Summary: A charity helping to educate people about Encephalitis, and care for those affected