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Why Tom's migraines are so very terrifying.


A TEENAGER'S rare condition means he can become paralysed every time he has a headache.

Thomas Bell, 18, has lived with epilepsy since he was born and also lacks co-ordination in his movements due to dyspraxia.

But it was when he was just 11 years old that Tom first suffered a terrifying "stroke-like episode" which left him in a wheelchair for three weeks.

He said: "When I had the stroke, I remember trying to get out of bed one night for the toilet, but couldn't find my balance and my speech was slurred. It was really scary.

"I stayed in hospital for a couple of weeks and even now I still feel a weakness down my left side."

As a result, Tom was referred to the RVI in Newcastle where he was eventually diagnosed with having hemiplegic migraine - a rare condition which causes temporary weakness on one side of the body.

In total Tom has had three stroke-like episodes, the last of which, two years ago, left Tom with a dangerous cerebral edema.

Meanwhile, the migraines would strike as often as twice a month.

Tom manages his symptoms with medication, but still struggles doing everyday tasks such as drawing and using a knife and fork.

"Thankfully, I haven't had a migraine in a while. My medication is controlling them quite well. I used to get them about twice a month," he said. "I had my first one aged 11 but it wasn't until my second one that I was diagnosed."

Often mocked at school, Tom is now shining a light on invisible illnesses with a poster campaign with Fixers, the national charity that gives young people a voice.

"Kids used to flash lights in my eyes and say things like 'I want to see you have a fit'" said Tom, from Ingleby Barwick. "Unfortunately, I don't think people take me seriously because they can't see there's anything wrong. I wish people were more understanding.

"My epilepsy was something I was quite sensitive about and it got to me."

His Fixers poster campaign explains more about his conditions and he hopes it will educate people about invisible illnesses so they can be more supportive of those who have them.

He said: "I'm really happy with how the poster turned out. We wanted it to be informative and I think it gets the message across.

"The idea is to encourage people to take these conditions seriously and not ridicule others who have them. The plan is to take the campaign to local schools and drive home the message there. I want to thank Fixers for helping me with this project because it gave me a chance to open up about an issue close to me."

Fixers works with young people aged 16-25 by providing them with professional resources to help them campaign on issues that matter to them. The charity has helped more than 20,000 youngsters across the UK to have a voice on issues such as cyberbullying, self-harm or suicide.

Tom is now studying Sports Level 3 at Bede Sixth Form College in Billingham. |For more information or to make a donation to fund more Fixer projects, visit


Tom Bell, 18, is shining a light on conditions that are invisible KATIE LUNN

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Publication:Evening Gazette (Middlesbrough, England)
Date:Feb 6, 2018
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