PANDAS: 'My followers help me and I probably help them'

Neve Collins shares her experience living with PANDAS with thousands of followers on TikTok

A 17-year-old girl has raised more than £20,000 to fund treatment in the US for a rare condition which sees her have dozens of seizures a day.

Neve Collins, from Stafford, was diagnosed with PANDAS nearly three years ago after contracting a streptococcal infection.

She has been sharing her life on social media with almost 100,000 followers to raise awareness of the condition.

"My followers help me wake up in the morning and I help them too," she said.

"I've got so much support on social media and I know they feel like I'm supporting them."

PANDAS, or Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, is a rare condition that affects young people when common infections trigger a misdirected immune response and brain inflammation.

For Neve, it first started with chapped lips which the family later discovered was a streptococcal infection.

Her condition means she has multiple seizures a day and involuntary tics.

Neve's mum Vicky said her diagnosis had completely changed their family life

Neve's mum Vicky said her diagnosis had "completely changed the family", as they struggled to make plans in case Neve became unwell.

"She can't have a normal life, she can't just go out with her mates and us not worry," Ms Collins said.

While sharing her experiences on TikTok, Neve and her family have also been appealing to pay for treatment in the US and have so far raised more than £20,000.

"The reaction has been brilliant," Ms Collins said, adding they had raised enough for two rounds of treatment called IVIG.

She said the family owed a particular thanks to the Staffordshire footballing community, which had supported the fundraiser.

"It's just incredible, you can't thank people enough when they're literally about to change your life," said Neve.

"They don't understand how much they're impacting me, it means the world."