Jula Jansen

I was just under 17 when my life suddenly changed. I started stuttering, stumbling over my words. More and more often, I couldn’t remember what I wanted to say, or how to say it. Simple things became confusing. I tried to screw a cap onto a bottle, even though there was already a cap on it. It felt as though my head was getting fuller and fuller, but at the same time I couldn’t tolerate any stimuli. Sleeping a lot, forgetting everything, blaming others in particular, which led to a lot of arguments, including with friends. I made a mess of my food a lot, and my day-night rhythm was turned upside down. Everything was a struggle. I was constantly tired.

The GP thought it was stress. The advice was to take some time off. But that didn’t help. Even in the quietest moments, I couldn’t speak anymore. My mum took me off school, hoping that rest would help. But it got worse.

At work – I was part of the entertainment team at a holiday park – things were also falling apart. I could still manage during training sessions, but social interaction? That was no longer possible. I didn’t understand conversations and lost touch with my friends. They thought my behaviour was strange. And to be honest: so did I.

Things weren’t any better at home. Everything felt confusing. Not because I had a headache, but because I no longer ‘understood’ the world around me. As if my brain had stopped working. I found that terrifying. I couldn’t explain it either. What do you say when you don’t understand what’s happening to you? All I wanted was to sleep. Some peace and quiet.

We went back to the GP. Could it be something physical? I’d had pneumonia before. Could that have something to do with it? In February 2024, I started seeing a paediatrician. He couldn’t really explain what was happening to me either. It was suggested that I have an MRI scan of my head to see if there might be a tumour. That really panicked me, so I initially refused, partly because things seemed to be improving slightly for a short while. But from May onwards, things got a little worse every day. Until, by August, I couldn’t function at all. My speech was almost completely unintelligible; only my mother could make out what I was saying. All sense of logic in life had vanished for me. I was crying all day and functioning at a toddler’s level. My mum simply couldn’t believe this was due to stress. So, after the summer holidays, she went back to see the GP and the paediatrician. After hearing her story, immediate action was taken. That’s when the MRI, which I’d previously refused, was done. Fortunately, the results were fine, apart from a small scar visible in the white matter, but that wasn’t anything to worry about.

Because I snored very loudly at night and was very restless with my arms and legs, epilepsy or sleep apnoea were suspected. That’s why I first had a short sleep EEG at the hospital. It showed that all sorts of things were happening, but that didn’t really fit with epilepsy. Just to be sure, I was referred to the epilepsy centre in Zwolle. A 24-hour EEG was carried out. The very next day, my mum received a call telling her that it wasn’t epilepsy, but that what was happening in my head was certainly a cause for concern. Meanwhile, I was getting worse and worse; every stimulus felt overwhelming and too much. After some further neurological tests, it was finally decided in November to take a closer look at what was going on. By then, it seemed as though I had an intellectual disability and was functioning at a very low level. Under light anaesthesia, a large amount of blood and brain fluid was taken. This was sent to various specialist hospitals, with Erasmus UMC playing the leading role. There was a sense of urgency in all the tests. After a week, on 14 November 2024, the relieving yet devastating phone call finally came to my mother. It was very serious: anti-NMDA receptor encephalitis.

The day after the diagnosis – 15 November 2024 – I was already in hospital for my first course of medication. First, a five-day course of prednisone. That slowly helped me recover. By the end of the first day, there was even a noticeable improvement: I could form short, intelligible sentences again. But because, after five days, the hospital staff still felt that my condition was too unstable, I was also given five days of immunotherapy. That worked really well. Really well. I noticed a difference after just a few days. I felt everyone was treating me like a child. What I didn’t realise was that they were doing so because, when I was admitted to hospital, I was functioning at a very low level.

Slowly, I started to recover. I began to enjoy having visitors again. I could understand conversations. I participated in games. I was starting to feel alive again.

In total, I was hospitalised three times for treatments. After the second course of treatment, lasting just 3 days and involving both drugs, the bad cells were gone from my body. The third was an extra boost, just to be on the safe side. And on 17 January 2025, I could finally say: “My last course of treatment is over”. Dancing and with a guard of honour of doctors, nurses and educational staff, I left the unit.

Over the coming years, I will remain under observation, with an MRI scan of my abdomen and the occasional clinic visit. The MRI is because the antibodies that caused this are associated with a tumour in the fallopian tubes or ovaries. Fortunately, nothing has been detected so far.

I am also taking part in a study by Erasmus UMC, as it is a rare form of brain inflammation. We definitely want to help to learn more about it.

Now, months later, I’m still recovering, but I feel well and I hope the upward trend continues. My friends are back in my life. I’m working at the holiday park again. My speech is normal. It’s just that I sometimes get tired more quickly – especially after a busy morning at work. Then I look for rest and get some sleep. I’ve always loved that. Some things never change (haha). However, I do have a shorter fuse now, I can get angry quickly, and when I do, I find it hard to hold myself back.

I temporarily put my Care and Welfare Assistant studies on hold. My mother withdrew me from the program when it became clear what was going on with me. After the summer, I want to start again. It feels bittersweet, though—my friends have already graduated. But I want to earn my diploma. For myself.

I'm only 18. I still have so much ahead of me. And after everything I've been through, I know one thing for sure: I just want to be myself. To live my own life.