A teenager who was diagnosed with a condition and told her distressing symptoms would 'fizzle out' is now in a bid to raise awareness.
Erin Wall, from Richhill in Co Armagh, was in Primary 7 when she first began to experience pains in her ears and trouble with her balance which would cause her to fall over. These symptoms developed and the young woman started to faint and have black outs.
The 15-year-old went through medical investigations, to which nothing was found at that time. As she transitioned into high school, Erin's black outs happened more often, and could have lasted hours.
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Speaking to Belfast live, Erin's mum Ruth spoke about how her daughter was later diagnosed with FND "Functional Neurological Disorder", a condition where there is a problem with how the brain and nervous system send and receive signals.
She said: "Erin started experiencing various symptoms back in Primary 7, and with FND, it can present in lots of different ways. It has a really broad range of symptoms. But at the start, we had no idea what was going on.
"It started with pain in Erin's ears and that progressed where she was having balance issues and falling over. Her legs were giving out under her at times too. This progressed over a year and she was having lots of investigations and nothing was being found.
"When Erin moved to high school back in 2018 she started having what looked like fainting spells and black outs. These became more and more frequent and were lasted for longer periods of time. Again, there were a lot of investigations and eventually ended up in neurology.
"Over the last few years, her symptoms have progressed. The blackouts evolve to full blown seizure and she took her first seizure about four years ago at home. It was a really frightening experience for everyone. She could have seizures which look to the layperson as an epileptic seizure, quite convulsive, but she could have other ones where she would just black out.
"She could be walking along, or standing, and just hit the ground. Those vary and Erin could be blacked out for a couple of minutes, or for a couple of hours - completely unresponsive.
"There was a period of time where this was happening regular in school and there wouldn't have been a week were I wouldn't have to go, and an ambulance was called. We have had periods of paralysis through this too, where she couldn't walk for four days. It was a horrendous time."
Erin was initially diagnosed with NEAD (Non Epileptic Attack Disorder) which comes under the umbrella term of FND (Functional Neurological Disorder). Northern Ireland has over 1500 people living with Functional Neurological Disorder and while it is a common condition, information and awareness in Northern Ireland is low.
The young woman, who attends Portadown College, will enter her GCSE year in September, and despite her condition, she remains at school and has vowed to raise awareness for FND.
"She is still having seizures and blackouts, but not as frequently," Ruth added.
"But she does suffer from really severe fatigue and has to work on managing her energy levels. FND has such a broad range of symptoms, and can affect people in lots of different ways.
"The trouble that we have, and FND NI is working really hard top raise awareness on it, is that there is no specialist treatment in Northern Ireland and no pathway of care with somebody with this diagnosis. Erin's experience, which is very typical, was once neurology provided that diagnosis, she was given a leaflet with some very basic information and we were sent away to look at a website that would tell us more.
"Erin was then promptly discharged. It is a very difficult position to be in because the issue is, there is a real lack of knowledge within neurology services about the condition and because there is no physical problem to see, it is almost an unbelievable situation to be in.
"We were told that Erin's symptoms would just fizzle out. It is difficult to believe."
And while going through what she has, Erin is determined to help others with FND, and to help the charity FND Matters NI, who have been a lifeline to her and her family.
FND Matters NI offer support through peer group meetings, a befriending service and FND trained counselling services. Through the charity, Erin has had the opportunity to meet other young people with FND in Northern Ireland through the young persons support group.
She said it was "a relief to realise there were other young people who understood what I was going through" and who were experiencing similar challenges. FND Matters NI offer FND patients support, provided at no cost to the patient, but funds are needed urgently to enable them to continue the services.
On September 25, Erin will be abseiling down the side of the Europa Hotel in Belfast, to raise money for FND Matters. She has already raised over half of her target of £500 and has encouraged anyone in a position to help, to do so through their Go Fund Me link here.
For more information on the work that FND Matters does, visit their website here.
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