Devastating news that her teenage daughter was suffering from a rare brain condition sparked Michelle Williamson’s involvement with a national charity. James Johnston reports
Smiling with her mum, Katie Williamson looks like any other care-free teenager. 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, in 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.
Katie highlighted her condition after running with the Olympic torch through Sundwerland last month. She was chosen for her charity work.
She’s a youth representative of the IIH charity, which provides information and support for patients, families and medical professionals, and said: “I was looking forward to carrying the torch and the experience was really exciting.”
Michelle has also become involved with IIH UK, a charity founded by sufferer Rachel Turner, and 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, an 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. 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, 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 leaflets and posters into hospitals, GP surgeries, opticians, anywhere that will have them.”
For more information, visit www.iih.org.uk or www.iihsupport.org
“I wasn’t sure where to turn”
Four years after being diagnosed with IIH, teenager Katie Williamson is still battling the rare brain illness.
But as youth representative of the IIH UK charity, the 17-year-old helps support other young suffers, as well as arranging group meetings in the North East.
“When I was diagnosed in 2007, I felt lost and scared,” she said.
“I wasn’t sure where to turn to because nobody understood. It’s so hard for anyone to understand because it’s an invisible illness. I’m treated as if there’s nothing wrong with me, which is horrible when I’m in a lot of pain and everyone thinks I’m making an issue of absolutely nothing. I was in denial and felt like it wasn’t happening to me.”
With the help and support of her family, doctors and work with IIH UK, Katie is coming to terms with her affliction.
“I’d had no health problems prior, so it was a shock to the system to find out I had this rare neurological illness. Since my illness only affects one in 100,000, when my mam and I found the charity soon after I was diagnosed, it was a huge relief to know other people who suffer the same way that I do. We instantly wanted to be a part of the charity and, since we joined, it has gone from strength to strength.”
There are an estimated 1,748 new cases of IIH reported every year in the UK.
About 93 per cent of all women with IIH are obese.
About 25 per cent of all people with IIH go blind. However, this is avoidable in almost every case with treatment.
Twice as many men with IIH go blind as women
There are about 57 new cases of children aged one to 16 with IIH each year.
The total number of children with IIH is in excess of 800. They suffer “broken education” and their siblings are adversely affected, spending non-school time with parents in hospital family units.