The mother of a Suffolk woman who suffers from severe Tourette's syndrome says her daughter's life is being put on hold and wants to raise some awareness about the often misunderstood condition.
Molly Greig , 21, has needed urgent help that saw two air ambulances called in a week.
She hasn't been able to work or drive since November 2020, when her Tourette's seemingly out of nowhere became significantly worse.
Growing up Molly, who lives near Bungay, had experienced mild ticks, both verbal and physical, but in the past year her condition has degraded to the point where ambulances are now having to be called to help her.
"It's very stereotyped to a condition that makes you kind of tick and swear, say inappropriate things," said Molly's mother Emily. "Which only 10% of the people with Tourette's actually do."
However, Molly has been suffering from what they have named 'tick attacks', where she goes so far into an attack it takes over her whole body and almost mimics an epileptic fit.
Emily added: "Molly said she feels like she's sucked into a black whole and she can kind of hear what's going on around, but she's got no control over her body, her limbs and she very rarely has any recollection afterwards."
Twice in a week the air ambulance has been called after the ambulance couldn't provide the required treatment.
They have been looking for solutions, but it's not something that can be treated with daily medication and the options they do have are few and far between.
"She's tried about 10 different medications, all of which have had awful side effects and not made any difference to her ticks.
"We don't feel like we're managing her condition. We're just dealing with crisis points when it happens.
"We don't really know what we can put in place. We feel quite stuck really."
The problems aren't always large attacks, but even simple things like reading, which Molly loves, can be challenge when her ticks make her eyes roll.
They have been in contact with charity Tourette's Action, consultants, specialists and said the NHS has been "amazing".
However, it has been a very difficult process to get a care plan or find a solution - particularly for a young adult like Molly according to Emily.
"We don't expect a magic pill," she added. "We know that. But every time you meet someone and they can't help it just reiterates to Molly that her life is on hold."
To find out more visit: tourettes-action.org.uk.
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