Jess Lydon, a 19-year-old from Walsgrave, Coventry, UK, has been struck down by one of the rarest of all neurological disorders, which effectively wipes her memory clean every 24 hours. The Daily Mirror reported in February 2012 that she is suffering a “Groundhog Day nightmare”, and that about sums it up. The reporter in Groundhog Day is forced to relive the same twenty four hours almost as though he’s lost his memory (although actually, in the film, it isn’t his memory that’s affected, it’s just that the day keeps repeating, endlessly, and very weirdly).
Just like the journalist in Groundhog Day (played by Bill Murray), each new day is just like the one before for Jess – she starts from scratch, with a clean slate, and just has to try to make the best of it. But this isn’t some entertaining rom-com, this is real life … Groundhog Day for real!
“I can’t even remember what I had for dinner the night before,” Jess says.
“I can’t remember Christmas, or my 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.”
Susac syndrome, a neurological disorder
Jess has been diagnosed with Susac syndrome, and consultant neurologist Holger Allroggen said, “Most neuroscience centres would see no more that one case every few years”. Nobody really knows exactly what causes the condition, but, going by previous cases, it could take up to five years for the symptoms to disappear. In extreme cases, it could also result in loss of sight or hearing as well as the almost total memory loss.
Jess’s neurological symptoms began with severe headaches and dizziness, and after being rushed to hospital, doctors struggled to find the cause of the disorder. Months of tests followed before a disorder diagnosis was reached.
At various times, Jess has suffered various neurological symptoms, including vision impairment and hearing loss, and an aversion to natural light, as well as the severe headaches. Also, her balance is disturbed, making it impossible for her to look after herself properly. She has moved back in with her mother, Tracey, who now cares for her and helps her with the mundane things of everyday life, like bathing and washing her hair.
Jess has had to give up work, and suffers delusions, as well as the more obvious neurological symptoms – when she was admitted to hospital, for example, she was convinced surgeons had to remove a shoe they’d left in her stomach after an operation.
Since Jess was finally given a disorder diagnosis, she and her boyfriend have split up, but, due to the Groundhog Day nightmare she suffers, she wakes up each and every day thinking they are still together. Only last year, Jess, an aspiring actress, memorised the entire script of a West End musical for a starring role, and now, due to Susac’s syndrome, she can’t even recognise the names on her get well cards.
Susac’s weird symptoms
Susac syndrome is named after Dr. John Susac (who died on 23 February 2012, coincidentally the day after the story was featured in the national press), and is so rare that there have only ever been about 250 cases recorded worldwide. The condition is much more prevalent in females, with a ratio of female to male of 5:1.
In some cases, people suffering Susac’s believe they are reliving an episode from their past, and sometimes they believe they are living in a foreign country. In some cases, the intense headaches can be unremitting, and sufferers can sometimes experience a personality change and display strange, paranoid behaviour (which, considering the weirdness of the condition, isn’t really that surprising).
Cause of the disorder
MRI scans of Susacs patients show brain lesions similar to the kind one might expect to see in the brains of MS patients, and although the cause of the disorder is not clear, the condition is thought to start with an inflammation of the capillaries in the brain.
Jess is currently being treated with steroids, and the neurology team are at least hopeful that her situation will right itself in time, probably in four or five years. Hopefully, by then, she will be free of Groundhog Day.
It’s sobering to think that the slightest damage to a tiny blood vessel in the brain can potentially result in a life-changing condition like Susac’s syndrome. We should all wake up every day feeling a deep sense of gratitude for the good health we too often take for granted. Yesterday might have been a really good day, maybe even one of the best, but we don’t want to relive it again … and again … and again …
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