She thought it was just hay fever, but now Tia-Leigh can’t see without glue, tape or even Botox injected into her eyes – her rare condition has left her living in fear of losing her sight
For 21-year-old Tia-Leigh Streamer from Dorset, her life changed overnight in 2023 when she woke up with a drooping eyelid. At the time, she put it down to seasonal allergies – nothing major. But what started as a small annoyance would later leave her physically taping her eyelids open just to get through the day.
The neurological disorder causes abnormal contractions in the eyelid muscles, triggering uncontrollable blinking, twitching, and spasms. It happens when the part of the brain responsible for eyelid movement stops working properly – but in most cases, doctors don’t know why.
“I have the same level of sight as a visually impaired person but I’ve got nothing wrong with my eyesight,” said Tia-Leigh, who was an aspiring trainee accountant.
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There’s currently no cure, but she’s been trialling a treatment that many wouldn’t expect – Botox injections directly into her eyelids. “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,” she said.
Doctors at Royal Bournemouth Hospital started her on the injections in March last year, and since then, she’s relied heavily on them – just to open her eyes. When the Botox wears off, she’s left physically holding her eyelids open to see. And because that’s not sustainable, she’s often forced to glue or tape them open – leaving her with bruises from the tape.
“When I glue or tape them open I can’t blink at all. The doctors have said the longer I do that for then I’ve got more chance of actually damaging my eyes and then possibly losing my sight, which I don’t want to do,” she said. “It’s hard, because I’ve either got no sight or one hand essentially.”
Even with the Botox, her eyes can shut from things as simple as sunlight, headlights, or a computer screen.
“I know it’s neurological but they don’t know what causes it, which makes it worse for me,” she said. “If they could say it’s caused by this, I think it would make me feel slightly less in the dark.”
“To be told I’ve got this for the rest of my life and not know why is a hard thing to deal with.”
Before her diagnosis, Tia-Leigh was training to become an accountant – a career that relied on her being behind a computer screen. She was told that would no longer be possible.
“It was awful to be honest. I had everything planned out,” she said. “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.”
Halfway through treatment, she was prescribed antidepressants to cope with the emotional toll. “I tried therapy, I’ve tried hypnotherapy but nothing was helping,” she said. “The longer it’s gone on I’ve gotten used to it but there are still days where I get really down about it. Especially as the Botox runs out.”
She also fears her body might get used to the injections and they could eventually stop working. While the condition has impacted every part of her life, her biggest struggle is the loss of independence. Tia-Leigh now avoids going out alone, in case she suddenly can’t see.
“I’m basically inside most of the time,” she said. “It stops me doing things I enjoy. I used to do a lot of crocheting, but you need two hands to do that – so I can’t even do it at home.” Even making food is difficult. With only one hand free, she often relies on her family to prepare meals – and sometimes even has to ask them to cut it up.
“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 said.
Tia-Leigh got married in December last year – but even her wedding day had to be planned around her Botox injections. “I wanted to make sure that I had the Botox two weeks before my wedding because it takes my eyes about a week to open after I’ve had it done,” she explained. “It was a scary day and I think that’s one of the reasons that prompted us to get married so quickly.”
While the wedding went smoothly, she has one big fear she still can’t shake – having a baby in the future.
“Night-time is the worst. They just won’t open at all,” she said. “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 added that she knows blind parents exist and thrive – but the fear will remain until she one day becomes a mum herself.
Right now, her treatment plan is trial and error. Her doctor is adjusting the amount of Botox in her top and bottom eyelids, hoping for longer-lasting results. “He might change slightly where he puts the injections and he’s going to be monitoring it and seeing how long it lasts,” she said. “It’s about hoping he’ll be able to find a better balance so we can have some longer effects out of the Botox.”
Tia-Leigh has been sharing her journey online and now has more than 3,000 followers on TikTok.
