A mother left blinded, bald and paralysed by a parasite lurking in her contact lenses has vowed to move 10,000 miles to the UK for free NHS treatment.
Claire Wilkinson, 38, from Brisbane, has battled the acanthamoeba keratitis (AK) parasite for a decade – despite doctors initially saying she had conjunctivitis.
‘The B****’ – Mrs Wilkinson’s name for the parasite, left her unable to go out in the light, forcing her to take sunglasses and wear a towel over her head each time she ventured outside. Her feet also swelled to twice their normal size.
But treatment failed to kill the microscopic infection, which she could feel crawling across her eye. Instead, it caused agonising ulcers to her left eye, brain surgery triggered a stroke and a complete corneal transplant proved unsuccessful.
Describing her ordeal, the former doctor’s receptionist added: ‘I’ve been through childbirth, I’ve dislocated my knee repeatedly – but this pain was 100 times what I experienced with both.
‘I was in such agony I wanted to die. It felt like shards of glass were ripping through my eye.
‘I could tell when it was awake and when it was snoozing. The B**** went on to have parasite babies in my eye. It was disgusting.’
Despite being far from cured, Mrs Wilkinson, whose husband David Rochford, 44, now acts as her full-time carer, has been told there is no further treatment available for her in Australia.
Mrs Wilkinson now hopes to be treated at London’s world-renowned Moorfields Eye Hospital, emigrating to the UK in four years time when her daughter is old enough for them to make the move.
Mrs Wilkinson said: ‘I’ve been told the technology isn’t available. But, I’m hopeful, there might be in London.
Claire Wilkinson, 38, from Brisbane, has battled the acanthamoeba keratitis parasite for a decade – despite doctors initially saying she had conjunctivitis
‘The B****’ left her unable to go out in the light, forcing her to take sunglasses and wear a towel over her head each time she ventured outside (pictured with her son Connor before her ordeal)
‘I know of an operation in London which they wouldn’t perform in Australia but I am hopeful would cure me of pain.
‘My daughter will be leaving school in four years and afterwards we intend to move to the UK. It’s a big move, but I would do anything to get better.
‘As soon as my youngest child finishes school, my husband and I plan to leave Australia and try and get free NHS treatment. I cannot live with my eye like it is.
‘If someone said your condition could be improved by knocking on 10 million doors and asking for a dollar from each person, I would get walking.’
When did her ordeal begin?
Mrs Wilkinson’s ordeal began back in February 2007, when one morning she put her contact lenses in, like usual.
But it had not been until she got to work 30 minutes later, that she started feeling unbearable pain in her left eye.
From then on, even the slightest amount of light caused her unbearable trauma. If she went out, she wore sunglasses and a towel over her head.
But treatment failed to kill the microscopic infection, which she could feel crawling across her eye. Instead, it caused agonising ulcers to her left eye
Despite being far from cured, Mrs Wilkinson, whose husband David Rochford, 44, now acts as her full-time carer, has been told there is no further treatment available for her in Australia
Mrs Wilkinson’s feet also swelled to twice their normal size as a result of the infection
Mrs Wilkinson said: ‘I’ve been through childbirth, I’ve dislocated my knee repeatedly – but this pain was 100 times what I experienced with both’
Visiting a local GP, she was diagnosed with the common eye infection conjunctivitis – an inflammation of the outermost layer of the eye.
Mrs Wilkinson said: ‘I knew it wasn’t that. I knew conjunctivitis wasn’t meant to be that painful.’
Later that night, she felt something crawling across her eye. She added: ‘That was agony. Then, later, it stopped.
Visiting an eye specialist
Four days later, Mrs Wilkinson, who lost her hair during the illness, saw an eye specialist at the Princess Alexandra Hospital in Queensland.
They scraped off a layer of her cornea and it was confirmed she had the AK parasite in her left eye. She said: ‘I couldn’t believe it.’
AK is an infection of the cornea, the clear ‘window’ at the front of the eye, and can be very painful.
The infection is caused by a microscopic organism called acanthamoeba, which is common in nature and is usually found in bodies of water as well as tap water.
But Mrs Wilkinson said she contracted it from her contact lenses, after using ineffective contact lens solution, which was subsequently recalled over safety fears.
As a result, she received a six-figure pay-out out-of-court.
The attempted treatments
In an attempt to kill the parasite, which had eaten into her cornea and optic nerve, she was given strong eye drops – to use every 15 minutes for seven weeks.
Mrs Wilkinson, who lost her hair during the 10-year battle, said she contracted it from her contact lenses, after using ineffective contact lens solution
Mrs Wilkinson now hopes to be treated at Moorfields Eye Hospital, emigrating to the UK when her daughter is old enough (pictured in hospital ahead of her brain injury surgery)
Mrs Wilkinson added: ‘They caused agonising ulcers to my left eye. On top of that I was exhausted. I had to just lie in the dark, as the drops made being in the light painful.
‘After two weeks, I was so tired I could barely stand. So, I went to stay at my mum Carron’s house nearby. She would drop them in my eye in the night, so I didn’t have to get up.’
But, 10 months later, the parasite returned and, once again, she had drops and it appeared to be killed off.
At the Princess Alexandra Hospital in 2008 she also had injections in the affected eye – aimed at numbing it, so she was no longer in pain.
Despite the parasite appearing to have gone, Mrs Wilkinson was still experiencing relentless discomfort.
A cornea transplant had failed and she was taking 38 tablets a day, together with pain relief injections every few hours.
Unbearable pain
Because of the parasite eating her eye, she was diagnosed with trigeminal neuralgia – extreme and sudden facial pain.
Mrs Wilkinson said. ‘It has been described as one of the most painful conditions known.’
Desperate to be pain-free, she was delighted to be offered brain surgery in 2011, at the Princess Alexandra – where medics planned to cut the nerves to her face, paralysing it, and stopping her agony.
But, during surgery, Mrs Wilkinson, step-mother to Lachlan, 19, and mother to Connor, 15, and Abbee-Louise, 13, suffered a stroke.
Mrs Wilkinson added: ‘There was a one in 10,000 risk of this happening and the hospital was blameless. I was just unlucky.
‘But, for months after the stroke, I was paralysed and bedbound. I couldn’t eat. It was horrible for my children, seeing their mum bedbound and tube fed.’
Following intensive physiotherapy, in early 2012 she learned to walk again. But her extreme trauma made her hair fall out and her stroke caused her feet to swell.