Written by Editorial Team, DonateToday
Published: Thursday, 22nd March 2018

Five years ill and five hours to complete a GCSE exam - this is how Functional Neurological Disorder has affected Hope from County Durham

Hope has experienced symptoms of Functional Neurological Disorder (FND) for a number of years. These symptoms have escalated to the point where has been unable to attend school throughout her key GCSE years and is now studying a college course online.

Innocuous

Hailing from County Durham in the North East of England, Hope enjoyed, as her mum Catherine puts it: ‘A completely normal primary education.’ She describes her daughter as: ‘A bright kid – always off on trips and doing things.’

Unfortunately, a seemingly innocuous injury sustained when playing with her younger brother triggered a number of symptoms in Hope from which she has yet to recover – she was eventually diagnosed with Complex Regional Pain Syndrome. ‘I started having seizures or muscle spasms – I’m still not quite what to call them,’ the youngster recalls. 

‘I went to hospital and had tests for epilepsy – everything came back clear, which was good, but I was just told nothing was wrong, while I was still having symptoms.

‘I found throughout my years of being ill one of the biggest challenges has been facing medical professionals,’ Hope says. ‘At times I feel I’ve been treated unfairly and incorrectly, the repercussions of that on both my physical and psychological health are more detrimental than people realise, even from those with the best intentions.

‘Through persistence and research and my parents finding things out on the internet,’ Hope continues, ‘We found Professor Mark Edwards in London. We managed to get to see him and he made the diagnosis. 

‘I have FND, alongside chronic fatigue syndrome and hypermobility.’

"She just wanted to be normal like any other teenager, and get better and back to school."

Catherine, Hope's mum

A Vicious Circle

Unfortunately, despite FND being a relatively common condition, it is also relatively unknown, Hope says. ‘I only got a diagnosis about a year ago because there just wasn’t any information around it,’ she explains.

According to charity FND Action’s website, while symptoms of the condition ‘may appear similar to neurological diseases including Multiple Sclerosis, Parkinson’s and Epilepsy, and can be just as disabling, they are not caused by structural disease of the nervous system, but instead are a problem with the ‘functioning’ of the nervous system.’ 

Hope has been affected by FND for a number of years and turns to photography to help her express how she feels about living with the condition

In Hope’s case, she says, her main symptoms are seizures and fatigue. ‘My fatigue tends to affect my seizures quite a bit,’ she explains. ‘The more tired I get, the more seizures I have, and the more seizures I have, the more tired I get. It’s a bit of a vicious circle.’

These symptoms have made it impossible recently for Hope to attend mainstream education, in spite of her ardent desire to do so. ‘She just wanted to be normal like any other teenager, and get better and back to school,’ Hope’s mum Catherine recalls. 

‘We kept trying and it was just too much – the fatigue got worse and then the seizures got worse, every time we pushed. She didn’t attend school at all in years 10 and 11, but we’ve got a service in County Durham that sends out home tutors, and her teachers were fantastic – there was a lot of emailing for guidance and they visited her at home, so we had a lot of support.’

This support culminated in Hope taking her GCSEs and achieving an excellent set of results, including an A* in GCSE Photography – a subject she passed with full marks. It is a story surrounding her GCSE English exam which perhaps shows the effects of her illness in the clearest light, however. 

‘It took her five hours to do one exam because every time she had a seizure, they stopped the clock,’ Catherine explains. ‘She kept having to rest every half an hour – she couldn’t even sit up by the end of it because her muscles were twitching so badly.’

"It's nice to get peer support, to know that you're not the only one going through it...rather than feeling like you're on your own."

Hope

FND Awareness Day

Fortunately, Hope has now found the charity FND Action and its online support groups. ‘It’s so nice to meet other people going through similar situations,’ the teenager says, ‘Although it’s hard to know that there are so many other people suffering.

‘It’s nice to get peer support, to know that you’re not the only one going through it, and to try and get better treatment together, rather than feeling like you’re on your own.’ 

FND Action is one of the organisations behind the annual FND Awareness Day which falls on Sunday March 25th and aims, as you might expect, to raise awareness of the condition both amongst the medical profession in the UK, and amongst the general public.

‘There’s a hashtag going around: #voices4FND,’ Hope explains. ‘It’s a way to try and connect people and to get the name out there. I think there are so many people who struggle with symptoms of FND who maybe don’t have a name for it because it’s so little-known. 

‘The awareness day is about trying to get it out there so that if someone who’s struggling sees it, they can then figure out how to get help.’

Rewarding

Hope first took up photography at GCSE level and has continued to pursue it ever since

Despite, the obstacles put in their way Hope and her family have not given up hope for the future. ‘I keep hoping for a magic pill or a magic wand, but that doesn’t seem to be on the horizon,’ admits Catherine. ‘Hope’s travelled down to London for the last year and a half to work with a specialist team who work with adolescents with complex conditions.

‘The fact that we’re in the North East and we’re going all the way down to London to get that kind of input will tell you how difficult it is to harness the right support,’ she continues. 

‘The journey itself absolutely exhausts her, but it’s good to be around people who get it and who want to help. They don’t necessarily have all the answers, but they’re prepared to try different things and hopefully things will gradually improve – we hope that this isn’t forever.’

‘If there’s one thing I’ve learned,’ Hope adds, ‘It’s that there isn’t a one-size-fits-all treatment for any illness and treating it that way can do much more harm than good.

‘I’ve had a number of unfortunately experiences that could have been simply prevented, if people had been more open-minded and willing to listen,’ she explains. ‘Although I don’t know why things happen medically, I do know my own body and, if people had been more willing to accept that and hear my voice, things may have been a lot different.’

There is also something that Hope has found to be very therapeutic; something that no article about the County Durham teenager would be complete without mentioning: photography. ‘I started off at GCSE just doing the basic things and then branched out into self-portraiture and surrealism,’ Hope explains. 

‘Through struggling with my health, I tried to put that into my photography and depict how I feel, and how it is to be ill, and to create hopeful pieces and pieces that help people understand more about it. It gets my emotions out in a really therapeutic way. 

‘It’s something that’s difficult for me to do because of my symptoms but it’s really rewarding and I really love doing it.’