Bobbi Marrow hasn’t been anywhere on her own for the last 18 months.
Whether it’s walking her dog around her home town of St Helens, shopping in the High Street or even going to the toilet, the 19-year-old jewellery designer always has someone close by.
"It’s difficult because I used to love being independent and doing my own thing," says Bobbi, who lives with parents Linsey and Paul, as well as sister Yasmin, 22, a student.
"But now, wherever I go, I need someone with me who I can trust completely, whether it’s a member of my family or my boyfriend Lewis, 20, a lifeguard.
"They have to watch me so carefully."
The reason Bobbi’s loved ones watch her like a hawk is that since March 2020 she has been suffering from functional neurological disorder (FND). This causes problems with the functioning of the nervous system and how the brain and body send and receive signals.
Since Bobbi’s first seizure – during an exam at her school – she has experienced up to 20 seizures a day and has no memory of each one, often even forgetting the hours leading up to the attacks.
"I don’t have any trigger at all although sometimes I feel them coming on for about 15 seconds before I have the seizure," says Bobbi.
"I feel a strange ‘rush’ up through my body and that’s when I know to get myself into a safe space such as a chair or the floor, but sometimes there’s no warning at all and I just drop.
"I’ve had loads of injuries such as falling down the stairs, falling with a glass in my hand, I’ve concussed myself several times, and once, when I was doing my hair, I had a seizure while holding the curling tongs in my hand and they fell and burnt my neck.
"That’s why I can’t do anything without my family around me. It’s really worrying for them too."
The exact cause of FND is unknown, but ongoing research suggests that chronic pain, fatigue stress, injury or infection may be a trigger.
Bobbi was diagnosed with FND two months after her first attack, following weeks of worry.
"I’d been to hospital shortly after my first seizure and had loads of tests such as an MRI and ECG and the doctors were clearly thinking it was epilepsy," says Bobbi.
"But when the tests came back clear, I was something of a puzzle to them.
"They referred me to a neuropsychologist who said she thought that the condition was a result of the stress of losing my best friend suddenly only a few weeks earlier.
"That was pretty traumatic but she also thought it also triggered the grief I felt as a child of losing my nanna and grandad closely together when I was about eight or nine.
"I’d never heard of FND before but hoped I could get treatment. But in the middle of the pandemic, we knew we wouldn’t be a priority.
"In February of this year, my mum rang the hospital only to find out that my name had slipped through the cracks and I hadn’t been referred for any treatment or to see the specialists.
"Now I have to wait for another two years before I get treatment such as cognitive behavioural therapy or the ‘tapping’ treatment EDMR.
"I’m also looking into getting a medical detection dog (the animals can predict an attack or seizure by recognising the different scents that their owners emit beforehand) but there’s also a long waiting list."
Bobbi also requires physiotherapy as sometimes after a seizure, her leg or legs will go into temporary paralysis for around five minutes each time and her muscles are weakening.
Despite this, she is trying to focus on the positive. She says that on a bad day now, she has around eight seizures. On a good day, "only" one or two.
"Having people around me who care about me and support me is really important," she says.
"When I’m feeling a bit down, my boyfriend or my sister will knock on my bedroom door and say: ‘Come on, I’m taking you out.'"
"It’s difficult for those around me to understand what’s going on. A few weeks ago I suffered a seizure in New Look and apparently people were gathering around asking if I was OK and my sister had to explain that it was ‘normal’ and I go through it every day.
"Sometimes I wake up in a place and I can’t even remember how I got there. That’s the weirdest part, piecing together what other people have told me about my seizure and where I am.
"I’m hoping I can raise awareness of FND because so many people don’t know what it is. They say they’ve never heard of it but I want people to know it’s real."
A petition has been set up to improve research, services and treatment available on the NHS for those with FND. You can view the petition by clicking here.
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