Fellow sufferers

‘Sharing experiences, learning from each other and feeling connected.’ These are the words we got back from participants of the first fellow sufferers’ day on 20 January 2023.

We have met fellow sufferers who have always thought they were the only ones with encephalitis. They felt alone and misunderstood. They could not share their experiences with anyone. Initially, they were uncertain about what to expect from the fellow sufferers’ day, but they found recognition and acknowledgement. Exactly what we had in mind. So much gratitude. Lasting contacts were made on that day.

One thing is certain: next year there will definitely be a second fellow sufferers’ day. The day when everything changed…

Do you know someone affected by a meningitis or encephalitis?

All fellow sufferers and their loved ones are very welcome to attend the next edition. Send an email to info@itsme-foundation for more information. There is also a facebook group ‘WE with ME’ where you can sign up. There you can have direct contact with fellow sufferers.

2023 Aftermovie The day when everything changed

Fellow sufferer stories

ItsME Trea Cuperus

2x Anti NMDA-R Encephalitis

And very suddenly my life took a completely different turn. It was during the preparations for my high school re-exam...

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ItsME Susan Sterke

2x Anti-NMDA receptor encephalitis

A trip to remember America was the destination, three weeks on the road with a rented motorhome. We had already...

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ItsME Elise Pit

Anti-NMDA receptor encefalitis

The Day That My Life Changed Too I was a single mother with two beautiful sons aged 10 and 8....

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ItsME Frea de Haan

LGI1-antibody encephalitis

On the night of 16-17 July 2017, I suddenly ended up in the Medisch Spectrum Twente (MST) in Enschede by...

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ItsME Carlien Jansen

Meningitis & encefalitis

As a young girl, I always had one big dream, to provide vaccinations to children in Africa so they wouldn't...

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ItsME Oda Berkhout

LGI1-antibody encephalitis

In May 2017, I was on holiday and noticed that there were gaps in my memory. For example, I work...

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ItsME Dorry Cox

Herpes Simplex Encefalitis

In May 2018, my world changed and with it my partner's. I have no memories of the day it happened,...

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ItsME Kim Ditewig

Herpes simplex encefalitis & anti-NMDA receptor encefalitis

When I was 14 years old, my life changed overnight. I am now five years further and 19 years old....

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ItsME Kitty Smeets

Anti-LGI1 encefalitis

I too have a history of autoimmune encephalitis. It all started in autumn 2017. I had a nice job and...

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ItsME Lia Peters-Vrolijk

Herpes simplex encefalitis

After a long flight from Australia to the Netherlands (at the end of March 2015), I thought the jet lag...

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ItsME Michel van den Adel

Limbische encefalitis

"Good morning Mr. van den Adel. Can you tell me what day it is today, and do you know where...

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ItsME Roelof Landman

Caspr2 encefalitis

The black hole We drive from home by car to Cuyk. It is a normal weekday. At the second exit...

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ItsME Sung Ritsema

Anti-NMDA receptor encefalitis

In late November 2017, I was driving with my eldest child -then 2 years old- in the car in the...

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ItsME Saskia Hazelaar Wijnholds

Anti-GAD encefalitis

In late 2019, my mother (then 61) developed strange symptoms. She was tired, had pain in her legs and her...

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ItsME Britt Gansewinkel

Herpes simplex encefalitis & anti-NMDA receptor encefalitis

Heading into the final year of the HBO Nursing course in 2020, I was busy publishing my research in the...

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ItsME Trodessa Barton

Meningitis

In the summer of 2018, I was enjoying a wonderful holiday in Cape Verde with my family. When out of...

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ItsME Henriëtte Veen

Anti-GAD65 encephalitis

July 2009, we went on holiday to the Czech Republic as a family. On the fourth day, I felt unwell...

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