Some mornings you might wake up and it feels like a mission just to keep your eyes open rather than falling asleep.
But this woman has to tape or glue hers open just to be able to see due to a bizarre condition.
One morning in May 2023, Tia-Leigh Streamer assumed she just had a bit of hay fever when she awoke with a drooping eyelid.
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And then, in that December, she woke up unable to open either of her eyes. The 20-year-old was referred to a specialist, with both her GP and doctors at Southampton hospital baffled by what was causing it.
Streamer was told she may have a rare eyelid condition called blepharospasm. The NHS explain this is where the muscles around the eyelids develop an involuntary spasm, causing them to twitch, flutter or blink uncontrollably.
And in severe cases, suffers may be unable to open their eyes due to excessive eyelid spasm.
The Dorset woman said she has the ‘same level of sight’ as someone who is visually impaired, except she’s ‘got nothing wrong’ with her eyesight.
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"I know it's neurological but they [the doctors] don't know what causes it which makes it worse for me, because if they could say it's caused from this, I think it would make me feel slightly less in the dark,” she said.
"To be told I've got this for the rest of my life and not know why is a hard thing to deal with.”
There is currently no cure for the condition, but doctors have been trialling a way to help Streamer keep her eyes open – Botox injections.
This has been trialled by docs at Royal Bournemouth hospital since March last year and she hasn’t been able to open her eyes without the jabs since.
When the Botox wears off, the only way she can see is by taping and gluing her eyelids or holding her eyes open with her hands. But even when it is effective, sunlight, car headlights and computer screens can trigger Streamer’s eyes to close.
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The woman says she’s not ‘been coping very well’ with the ordeal, as she says it’s particularly harder when the Botox runs out.
"The more often I have it, at some point my body will get used to the Botox and it won't work anymore,” she added.
"I have them done every eight to 10 weeks at the moment. It was 12 weeks. But I only get about three to five weeks where it actually takes any effect.”
Having to physically hold her eyelids open to be able to see, Streamer says doctors have told her the longer she does it for, the higher the chance of ‘actually damaging’ her eyes.
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"I've actually had bruises on my eyelids from the tape before."
Streamer was training to become an accountant but her condition caused her to stop working.
"It was awful to be honest, I had everything planned out. I was training to do that and I was saving to move out and get married and have children and it was all taken away from me,” she said.
But the main thing she struggles with is the lack of freedom as she ‘can’t be independent as much anymore’. It’s stopped her from doing things she enjoys, as well as the basics like making dinner.
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"It's like I'm going back to being a child again because I can't use a knife and fork and see what I'm doing,” she added.
Streamer is particularly worried about having a baby with her partner.
"Night-time is the worst, they just won't open at all. I have nightmares about a baby next to me and it's crying and I can't wake my husband up and I can't get around to help because of my eyes,” she explained.
"I do know now there are things that can be put in place to help because obviously people who are blind all the time still have children.”
Streamer said it’s going to be a ‘trial and error year’ with her doctor as they vary the amounts of Botox to see if they can find a better balance.
Topics: Health
Jess Battison