Sufferer wants more to know about life-changing illness
A MEDICAL condition which is hard to treat and difficult to diagnose has drastically changed the life of a local woman who is now hoping to raise awareness of functional neurological disorder.
Lesley Taylor, a former adult disabilities support worker, began experiencing symptoms of FND in 2019.
Since then she has been forced to quit work, stop driving, and is rarely able to leave the house due to regular seizures.
The condition stems from issues with the brain and body’s ability to send and receive signals, causing problems with the nervous system.
‘I was told by my doctor to think of it like a computer – there is nothing wrong with the hardware, but the software has glitches,’ said Ms Taylor.
In 2019 she was off work with a number of health issues when she suddenly became unable to move or speak.
She was taken to hospital, and while the doctor mentioned FND the following day, it was not diagnosed until a year later.
She has now learnt what tends to trigger her episodes, which can involve anything to short burst seizures to hours-long periods of paralysis.
Heat, anxiety and hormones can trigger severe symptoms, meaning Ms Taylor struggles to complete everyday tasks,
like shopping.
‘I definitely avoid a lot of situations because it is awkward to see people’s faces when I am having a seizure.’
The exact cause of the disorder is unknown, but has been linked to childhood trauma.
Her daughter, Megan Le Page, lives with her and has learnt how to support her as much as possible.
‘I’ve learnt through trial and error,’ said Miss Le Page, who has autism.
‘I don’t feel like I am always helping. As I have autism I sometimes feel like I can’t help myself. When you feel like you are managing, there is another symptom that comes up.’
Miss Le Page will frequently check on her mum, and will guide her through seizures or periods of paralysis through talking, and reminding her that it will soon be over.
‘Last year she started to have absent seizures. It looks like she is daydreaming – she is screaming at me on the inside but she just can’t verbalise it,’ she said.
As well as her daughter, the family cat has been an unlikely helper in the house.
‘The cat has got me out of episodes. She has come up and nudged my hand and it has got my movement going. She probably just wants some attention but it works. She has alerted Megan too, meowing for her to come downstairs,’ said Ms Taylor.
Due to the disorder being poorly understood, it is often overlooked or wrongly diagnosed.
‘The island needs to be educated because even some doctors don’t understand the condition. There are treatments available, but not on-island. To get treatment I may have to leave the island.’
Ms Taylor said that moving away would be a drastic decision, but may soon be the only option.
She urged anyone who suspects they might have FND to raise it with their doctor and push for their voices to be heard.
n More information on the disorder can be found at https://fndhope.org/fnd-guide/.
