Leeds teenager reveals unbearable pain of her ‘invisible illness’

Laken Wilkinson with her mum, Lindsey.

Laken Wilkinson with her mum, Lindsey.

5
Have your say

Laken Wilkinson was a sport-loving national Thai boxing champion.

But now the 16-year-old can barely walk and is in constant agony due to an incurable illness called Complex Regional Pain Syndrome (CPRS).

It’s the cruellest thing I have ever seen.

Lindsey Wilkinson

“On the outside, she looks fine, but it’s an invisible illness – it’s all on the inside,” her mum Lindsey, from Pudsey, Leeds, said.

“As a mum, you can’t do anything or take the pain away.

“It’s the cruellest thing I have ever seen.”

At its worst, sufferers of the little-known condition have amputations to escape the unrelenting pain – a drastic decision Laken can understand.

Her mum, 47, said: “She has sat there and said ‘just chop my leg off’.”

Laken told the Yorkshire Evening Post: “A lot of the time it’s unbearable.”

The teenager started getting pains in her legs two years ago and a series of tests eliminated other possibilities, so she was diagnosed with CPRS.

The condition had started with hypersensitivity in one of her legs, which meant even the slightest touch or change in temperature caused terrible pain.

“She could not wear anything on her leg because the pain would be excruciating for her,” her mum said.

The teenager underwent treatment last year, which did not help, and then in February she woke and was unable to move her leg.

The paralysis spread up her lower leg and now also affects her other leg and one hip.

Laken uses a wheelchair and takes a cocktail of medication to try to dull her pain and feelings of burning, including morphine.

She has also started suffering from blackouts, which doctors think occur when her body shuts down because the pain – which is said to be worse than every condition apart from terminal cancer – is unbearable.

“The condition exhausts her,” Lindsey, who also has older sons Brodhi and Levi, added.

“There’s no cure for this and there’s no awareness. We can take her to hospital when she’s having a flare-up and the doctors don’t know what it is.

“Her life stopped. She cannot do the things a normal 16-year-old would do.

“She used to do Thai boxing and train five days a week – everything has been taken away from her.”

Despite this, the strong-willed teenager took all her GCSEs and is now determined to raise awareness of CPRS.

“I get really frustrated,” Laken added.

“Doctors seem to think that because they don’t know about it, it can’t be real.”

After meeting others affected by the condition through the charity Burning Nights, she has organised a fundraising event next month.

Complex Regional Pain Syndrome is often triggered by an injury, but it is thought that the body reacts abnormally.

This results in severe, debilitating and long-lasting pain which can affect one limb or spread to other parts of the body.

The charity Burning Nights aims to support sufferers and increase awareness and Laken Wilkinson’s fundraising event takes place on November 4 at Pudsey Liberal Club from 7pm.

At the event, local footballers will undergo a sponsored leg wax and there will also be a raffle.

Faye Burdett before (left) and after she contracted meningitis. Picture: Meningitis Now/PA Wire

.

Family devastated by meningitis B accuse government of complacency over vaccines