2 days ago
Woman, 21, forced to 'glue eyelids open' just so she can see due to rare condition - but doctors say there's no cure
A woman who thought she had bad hayfever was diagnosed with a rare condition that means she sometimes has to use glue and tape just to keep her eyes open.
Tia-Leigh Streamer, 21, from Dorset was baffled when she woke up in May 2023 with a drooping eyelid.
Initially assuming it was seasonal allergies, it wasn't until months later that she was revealed to suffer with a disorder - blepharospasm - which causes muscles around the eyelids develop an involuntary spasm and cause the lids to twitch, flutter or blink uncontrollably.
Doctors at Royal Bournemouth hospital trialled Botox injections in her eyelids in March last year, and since then she hasn't been able to open her eyes without the jabs.
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.
Even when the jabs are effective, sunlight, car headlights and computer screens can trigger Tia-Leigh's eyes to close.
In severe cases sufferers may be unable to open their eyes due to excessive eyelid spasm. Doctors do not have a cure but are continuing to trial different volumes of Botox in her eyelids.
'I have the same level of sight as a visually impaired person but I've got nothing wrong with my eyesight,' Tia-Leigh, who was an aspiring trainee accountant, explained.
'I know it's neurological but they 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.
'To be told I've got this for the rest of my life and not know why is a hard thing to deal with.'
She admitted she's 'not been coping very well' and was prescribed antidepressants half-way through the ordeal.
'I didn't get along with them,' she continued. 'I tried therapy, I've tried hypnotherapy but nothing was helping.
'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.'
Tia-Leigh added that the longer she grapples with the condition, the more her body will get used to the injections and 'it won't work anymore'.
'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 remarked.
'The rest of the time I have to physically hold my eyelids open to be able to see anything.
'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.'
Tia-Leigh has even had bruises on her eyelids from the tape before.
'It's hard,' she admitted. 'Because I've either got no sight or one hand essentially.'
Tia-Leigh was training to become an accountant, but has had to stop working because of her condition - ruining the plans she had for her life.
'As soon as I got ill I was basically told that this was something that I could never do because of the computer screens,' she explained.
'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.
What is blepharospasm?
According to the National Eye Institute, blepharospasm (also called benign essential blepharospasm) is 'blinking or other eyelid movements, like twitching, that you can't control'.
'Eyelid twitching usually goes away on its own. But people with benign essential blepharospasm can develop severe and chronic (long-term) eyelid twitching,' the site explained.
Symptoms usually start with 'small eyelid twitches that happen every once in a while'.
This can increase overtime and often cause the eyes to close completely. In some cases, people also get twitches in other parts of their face.
It added: 'Blepharospasm happens when the part of the brain that controls your eyelid muscles stops working correctly.
'Sometimes blepharospasm runs in families, and women ages 40 to 60 are more likely to develop it. But in most cases, doctors aren't sure what causes it.'
Treatment options include Botox injections and in some cases a surgery called a myectomy - where muscle nerve tissue is removed from the eyelid - can be recommended to alleviate symptoms.
The NEI recommends seeing an eye doctor if:
Source: NEI
'It's the stress of it as well that makes it worse. Anytime I'm really stressed it will make my eyes closed and accounting, I found it really stressful.'
For her, the biggest struggle is loss of freedom and independence. She can't go out by herself if her eyes are closed, unless someone can drop her off. Tia-Leigh avoids solo outings because she gets 'too anxious not being able to see it'.
'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 to have two hands to do that so I can't do that even when I'm at home.
'I can't go down and make my dinner because I've got one hand so I'm restricted to what I can and can't make.'
Furthermore, she gas to ask her family to make her meals, and sometimes cut her food up for her.
'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,' the 20-year-old added.
Tia-Leigh got married in December 2024 and had to time her Botox injections to ensure she could see on her wedding day.
'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.
'I wanted to make sure I was going to be able to get married and be able to have my eyes open to see what's going on.'
Another future concern is having a baby in the future.
'I often have nightmares about it to be honest because even when I have Botox done, at night-time my eyes don't open,' she continued.
'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.
'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.'
The current solution relies on a trial and error year plan from her doctor.
'He's going to change the volume of the Botox in the top and bottom lid of my eyes,' Tia-Leigh said.
'He might change slightly where he puts the injections and he's going to be monitoring it and seeing how long it lasts.
'It's about hoping he'll be able to find a better balance so we can have some longer effects out of the Botox.'
She has been documenting her experiences on TikTok, where Tia-Leigh has more than 3,700 followers.
