Leeds TikTok influencer Megan Jackson raising awareness of rare paralysing condition
A Leeds TikTok influencer says 'there is no magic pill' to fix a neurological condition which she suffers from - but is using her 300,000 to raise awareness.
Megan Jackson, 21, from Alwoodley in Leeds has been using her 300,000 followers on TikTok to raise awareness and money for treatment for a neurological disorder she suffers from which often leaves her bedbound.
When Megan was 17, she collapsed in her sixth form common room and taken to hospital, where she was told she’d had a seizure.
After seeing three neurologists and waiting nine months, Megan was diagnosed with FND.
“It went from me having one or two seizures to being bedbound,” said Megan. “The seizures and the FND affects almost every part of my body and sometimes I can be left paralysed below the waist for days.
Megan started using TikTok to raise awareness for the disorder and has more than three million likes on her videos. One of her videos showing the reality of a seizure has 8.5 million views.
“I started TikTok because I felt like all we do is look at each other’s Instagram account and want someone else’s life
“That’s not the reality. I am extremely disabled and miss out on a lot of things. I can’t hold down a full-time job. I was sick of living a lie and wanted try to raise awareness.
“The more I posted on TikTok the more I became aware that it’s [the condition] not that rare.
“Everyone I have spoken to with FND has the same issues. There’s not enough research and no magic pill to fix it.”
According to the NHS, FND affects around one third of patients seen by the neurology service and is thought to be triggered by heightened emotions such as emotional or physical stress.
Megan also frequently loses her memory after she has had a seizure and rarely goes out on her own: “One time I’d been to the gym and had a seizure in the middle of the street in Leeds.
“I couldn’t remember where I’d been. I was on my own so had to just call my mum. Lots of people were scared to approach me to help, and walked past me.
“I also wanted to raise awareness so that people would be able to help if they saw someone having a seizure.”
Megan started a fundraising campaign to buy a herself a wheelchair, pay for private healthcare and donate to FND research. She has almost doubled her target, reaching £1,864 to date.
“What I need is intense therapy, in a rehabilitation unit. It feels like no-one’s listening.
“I am on anti-depressants to try and keep me going but every day is a serious struggle and I am not sure how long I can hold on for without help.
“I am seeing a private FND specialist in London, which gives me hope. The waiting list is five months but I can see light at the end of the tunnel.”
You can donate to Megan’s campaign here: https://gofund.me/3a38a0ad