Sick teenager told to Google her rare illness by doctors – now mum is helping others

Katie Williamson
Katie Williamson
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Devestating news that her daughter was suffering from a rare brain condition sparked Michelle Williamson’s first involvement with a national charity. James Johnston reports.

But the 17-year-old suffers from a crippling illness that causes a build-up of spinal fluid, putting pressure on her brain and triggering debilitating sight problems and migraines.

Doctors warned her when she was just 13 that she would have to undergo a series of operations in a bid to maintain her sight, and halt the horrendous symptoms that had plagued her for months. But in the traumatic months after her daughter was diagnosed with idiopathic intracranial hypertension (IIH), Michelle Williamson, from Biddick, Washington, faced a frantic search to learn anything about the little-known condition.

“When Katie was diagnosed with IIH, we asked for information and were told by hospital doctors that there was none and to go and ‘Google’ it,” she said.

“There was a real shortage of widely available support and information then. It was a major struggle.”

Four years on, Katie is still battling IIH, an incurable condition which affects just one in every 100,000 people, and faces further surgery in the coming years.

But after becoming involved with IIH UK, a charity founded by sufferer Rachel Turner, Michelle vowed to help other families and friends whose loved ones have been diagnosed with the illness.

“I first came across IIH Support on the web, a UK based online support group,” she said.

“I quickly became involved with that and was asked to join them in setting up an official charity to help sufferers of IIH.

“We have come a long way since our formation in 2008, although still have a long way to go.

“Membership of IIH UK has grown steadily year on year.”

The 47-year-old said her daughter, who also suffers from autism and epilepsy, responded badly to medication, forcing her to undergo a string of operations.

In 2008, surgeons inserted a lumbar, a peritoneal shunt which drained the cerebrospinal fluid from her lower spine into her abdomen.

She suffered another setback and had to undergo three more ops.

Her shunt was removed this year and two weeks later the agonising headaches were back.

Katie was rushed into hospital in March when surgeons inserted an ICP bolt into her skull to monitor the fluid pressure.

Mum-of-three Michelle, who is now a trustee and treasurer at IIH UK, said that although Katie’s eyesight was no longer under threat, her other symptoms could return.

“IIH is a neurological condition of unknown cause defined by increased intracranial pressure around the brain, without the presence of tumour or disease.

“The space around the brain is filled with water-like fluid.

“If, due to a variety of factors, the pressure around the brain rises then the space containing the fluid cannot expand.

“It is this excessively high pressure that produces the symptoms of IIH.”

However, the student at East Durham College, Houghall, near Durham City, is refusing to allow the affliction to hold her back.

As well as being a keen horserider and swimmer, Katie is a junior representative of IIH UK.

“We now have a very enthusiastic team at the charity and are confident that IIH UK will continue to grow,” said Michelle.

“We are busy promoting awareness, supporting sufferers, their families and friends.

“We are working with medical professionals and pharmacists. Research is being done.

“Our supporters are putting our patient information leaflets and posters into hospitals, GP surgeries, opticians, anywhere that will have them.”

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