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Hartlip family's hell after Evangeline Shuttlewood's mystery illness that makes her sensitive to sound
00:01, 21 May 2015
A mum has described her family’s year of hell after her child was struck down with a sickness that medical professionals could not diagnose.
Elizabeth Shuttlewood’s daughter Evie is left in agony at the slightest sound - and even experiences pain just before it rains.
The nine-year-old first started showing flu-like symptoms in May last year.
Her physical health got progressively worse over the following weeks, with a minor earache becoming unbearable to the point that any noise, such as a car driving past, made her scream in agony.
Every doctor that saw her, including those at Medway Maritime Hospital, were baffled by her condition and were unable to offer the family a diagnosis.
Eventually, six months after she first started exhibiting symptoms, Evie’s mother and dad, Nathan, 46, who have two other daughters, took her to see a specialist neurologist at Great Ormond Street Hospital in London.
It was there the family was told Evie was suffering from geniculate neuralgia - a condition affecting an estimated 0.1% of the country’s population - which leaves people with a permanent sharp stabbing pain in their ears and hypersensitivity to sound.
The condition is caused by a small nerve in the ear being compressed by a blood vessel and can also cause problems with large amounts of excess saliva, a permanent bitter taste in the mouth and a feeling of vertigo.
The family, who live in Hartlip, near Rainham, also realised a change in air pressure affected her greatly when they saw how she would wail in excruciating pain around an hour before it started raining outside.
Mrs Shuttlewood, 43, said: “There was no effective pain relief or treatment - watching her screaming and crying and there’s nothing you can do to help.
“We spent money on ineffective medications - £150 for one bottle of stuff that didn’t work.
“Times like when we had to go up to London by train and the noise of Victoria Station was just horrendous for her.
“She couldn’t go outside into the back garden; we live next to a railway line and that noise would kill her. For a year she was shut indoors - we were so isolated.”
But last month - against the odds - Evie’s pain started to become more manageable. She celebrated by entering an ice skating competition - a sport she has always been fascinated with.
She is currently taking part in the Skating Stars tournament at Silver Blades, Gillingham Business Park, and she hopes to conquer the regional rounds and get the opportunity to battle it out against winners from other areas of the country.
For more information, silver-blades.co.uk
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