Baroness Twycross: ‘I thought I had a brain tumour, but it was encephalitis’

Baroness Fiona Twycross developed encephalitis at age 13 – Paul Grover

When I was 13, I began to develop a strange constellation of symptoms, following a mild case of mumps: a viral infection that causes swelling in the sides of your face. Suddenly, I found myself experiencing severe headaches, mood changes, distorted vision and extreme exhaustion.

At the time, my parents initially assumed I was a bit bad-tempered because I was reaching adolescence, but I was convinced I had a brain tumour. As a family, we’d recently had a friend who had died of brain cancer and, in my childish wisdom, I never told my parents of my concerns. It doesn’t make any sense retrospectively, but I think I was trying to protect them and not upset them.

A few weeks later, I could barely see; I had blinding headaches and I was starting to feel increasingly ill. I had to tell my parents that I couldn’t face going to school, which was a big thing in the early 80s. Back then you didn’t get to stay home unless there was a particularly compelling reason.

But I didn’t have a brain tumour. Six weeks later, our local GP where we lived in Oxford, diagnosed me with encephalitis, inflammation of the brain that can be triggered by a viral infection and impacts around 4,000 people every year in the UK.

Lasting impact

At the time, I was very weak. We’d just been on a family holiday to Wales, and I think my parents thought the fresh air and exercise would bring me back to my normal self, but I couldn’t walk very far at all. I had six months off school, but the ongoing symptoms from encephalitis probably lasted for the best part of a decade and completely dominated my teenage years.

The worst part was the headaches – the only way I can describe it is: simply the most intense pain you can ever imagine, and then some. The sheer intensity and the fact it never went away, was a lot to deal with as a teenager, and apart from painkillers there were no treatments at all. There were days where I was literally unable to get out of bed because I was suffering so much. Back then, patient support groups for a condition like encephalitis simply didn’t exist and I didn’t have anyone I was able to speak to about what I was enduring.

‘The ongoing symptoms from encephalitis probably lasted for the best part of a decade and completely dominated my teenage years,’ says Twycross – Paul Grover

At times, I felt desperate. I wouldn’t want to exaggerate or say that I felt suicidal, but it did occur to me that I had access to painkillers, and there was something I could do to permanently remove the pain.

For my mum, one of the most alarming moments was when I appeared to lose the ability to read. I’d previously been a voracious reader, I started reading books before I went to school and never stopped. But suddenly I was unable to read at all for some time, either because my brain temporarily forgot how to do so, or because I couldn’t focus on the words because of the pain.

Gradual recovery

Eventually, I was able to return to school and study for my O-levels, but fatigue was a major issue. I would go to school, come home and sleep, get up to do my homework and then go to bed again. And I would spend most of the weekends resting. I’ve got some amazing friends from my school years, but it definitely did affect me socially and I wasn’t really able to do more until I reached sixth form.

But slowly I began to recover. When I was 18, I spent a year in Norway as an au pair, which was the first point at which I started to feel well again. I was able to complete university and begin my career, which eventually took me into politics.

Because of this, I definitely consider myself to be very lucky. I still have really bad reflexes, but apart from that, I have very few traces of any long-term impact. I know that I had a very lucky escape in terms of being able to finish school and continue on with my life. That’s not something that happens to many people with encephalitis, too many die or have permanent injuries, their personalities can change, they have to quit their jobs. It can turn the whole lives of people and their families upside down. It’s a horrendous disease.

Serious risk

I’ve been involved with Encephalitis International for many years, partly because it didn’t exist when I was struggling with my illness, and I felt it was something I would have really benefited from. I was in my late twenties before I met anyone else who had experienced it – someone who had developed encephalitis after a bout of measles. That was the hardest part for me as a teenager, the fact that I felt quite alone with it.

But in terms of awareness, I think the greatest change I would like to see now is more people realising the implications and risks of not getting their children vaccinated with the MMR jab. When I was growing up, this vaccine wasn’t available, and it would have prevented me from contracting mumps and then developing encephalitis. Yet we’re now seeing MMR vaccination rates declining to the extent that, six years on from the World Health Organisation declaring that measles had been eradicated in the UK, rates of infections are now surging. To me that is particularly shocking: we have a simple, effective vaccine that would prevent many children from going through what I experienced.

I do think that medical professionals need to be more aware of encephalitis as a threat. For me though, the key is to improve awareness among the public, particularly around vaccinations that can prevent it, as this can be a deadly illness and it can change people’s lives forever.

As told to David Cox

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