'I have cried so much': Tragedy of teenage actress whose memories are wiped by rare brain condition
A 19-year-old girl cannot remember attending her own grandmother's funeral last year after she was struck down with an incredibly rare neurological condition.
Jess Lydon, from Coventry, was diagnosed with Susac syndrome two weeks ago.
The condition is caused by inflammation in the tiny blood vessels in the brain and can affect sight, hearing, balance and memory.
One of the most distressing symptoms for Jess are the regular delusions she suffers as a result of the condition
There are fewer than 250 recorded cases in the world and doctors are still stumped as to why it can suddenly develop.
It means that Jess, who memorised an entire script to take the lead role in a production of the musical We Will Rock You last year, cannot remember what she had for dinner last night.
The frustrated teenager said: 'I can hardly remember anything that has happened in the last year – not even Christmas or my last birthday in December.
'When I look at photographs I just find
it confusing. The really upsetting thing is I don’t remember my nan’s
funeral last year.'
The disease has taken a heavy toll on Jess' life. She broke up with her boyfriend of two years and has been forced to move home with her mother Tracey.
Her mother has to help her with the most basic tasks such as bathing and washing her hair.
Jess also fears she will have to give up her job working in a bingo hall diner because her balance is so bad.
'I can’t go out on my own in case I fall over,' said Jess.
'Last week I fell downstairs. It was so painful I thought I had broke my foot – I was really scared.'
She is surrounded by get well cards at home but doesn't recognise many of the names. Her mother has to assure her she does know the people who sent them.
Distress: When Georgia was being treated at University Hospital, Coventry, she believed surgeons needed to remove a shoe they left in her stomach after an operation
Jess has also suffered sight loss, hearing loss, severe headaches and an aversion to natural light – all possible signs of Susac.
Her family say her personality has also changed, making her more frustrated and short tempered.
However, one of the most distressing symptoms is the constant confusion and regular delusions.
When Jess was admitted to University Hospital, she believed surgeons needed to remove a shoe they left in her stomach after an operation.
She later became convinced she was in hospital near her grandparents’ old home in Great Yarmouth.
Tracey said: 'I have cried so much since this happened. It’s not fair. Jess has got her whole life ahead of her but she has been struck down by something we know so little about.
'We don’t know how long this is going to affect her or what the future is going to hold for her.'
Susac syndrome is an extremely rare condition that mainly affects women aged between 20 and 40.
It can take up to five years to correct itself, while sight and hearing loss can be permanent.
Many doctors are unaware of the condition – a GP initally diagnosed Jess with vertigo.
Thankfully, a team at University Hospital worked out what was wrong within 12 days and she is now being treated with steroids.
Consultant neurologist Holger Allroggen led the team at University Hospital which diagnosed Jess.
He said: 'Susac syndrome is a very rare condition that most neuroscience centres would see no more than one case every few years.
'The condition is hard to diagnose because there is no one single typical symptom or confirmatory test.'