Five years ago Meg Jackson had her heart set on a career in the legal field and enjoyed everything any young woman would — going out with friends and living a fun and independent life.
That was until she began experiencing seizures and eventually was diagnosed with Functional Neurological Disorder (FND), a disorder affecting how the brain and body send and receive signals.
Now aged 21, Ms Jackson, from Leeds in the UK, requires almost full-time supervision and endures between three and 10 seizures a day.
The frequency and severity of her seizures mean it's not safe for her to complete a host of basic everyday tasks like showering, driving or taking a bus.
"I could drive but had to surrender my licence, I could go out with friends without worrying that I might have a seizure, I could bath and shower without being supervised, I could go on public transport without having to have someone with me, I could do things on my own," she told Yahoo News Australia of her pre-diagnosis life.
"I can’t swim and I really used to enjoy swimming, but I can’t anymore because it’s too dangerous. My memory loss also affects everything I can and can’t do. I can’t be in employment due to my seizures and memory loss."
After years of frustratingly being shoved to the back of the queue to get a specialist appointment through the UK's National Health Service (NHS), Ms Jackson took matters into her own hands.
She began uploading videos showing the harsh realities of living with FND to video sharing platform TikTok, with a viral video of herself having seizure last week receiving more than 7.4 million views.
Ms Jackson said she hoped the volume of viewers would help in her quest to cure her condition.
"I was also hoping that maybe I would find some answers. I hoped a doctor that specialises in FND may come across it and reach out but no such luck yet," she told Yahoo News Australia.
Because of how little research has been done into the condition, there's limited medical knowledge on its causes and suitable treatments.
"It is triggered by past trauma, heightened emotions and sometimes it’s organic, but there’s nothing that pinpoints why this condition happens." Ms Jackson said.
'It's really dangerous'
"I was given the option of cognitive behavioural therapy (CBT) but because I lost my memory after every seizure I would forget what happened at the appointment, and therefore I was discharged because the doctor didn’t think it would be efficient. And then I was left to fend for myself."
During seizures she has fallen down stairs, bitten through her tongue and chewed the inside of her mouth until it bled.
"It’s really dangerous. I always have someone with me in case [something like that happens]," she said.
Ms Jackson lives with her sister who cares for her alongside her girlfriend.
Closer to finding answers
Following the viral video, she set up a GoFundMe page after being inundated with people wanting to support her journey to getting help.
As well as raising well over her $1800 goal, which she will spend on an appointment with a specialist, Ms Jackson said she had made contact with an overwhelming number of others living with the same disorder.
"I have been so surprised! I had no idea that FND affected so many people yet there’s so little knowledge out there about it. I’ve also had lots of amazing comments and some bad ones, but the nice ones always outweigh the bad," she said.
Updating her 271,0000 followers this week, she thanked those who donated and said funds already raised meant she could afford an initial and follow-up doctor appointment.
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