Woman who suffers from rare condition forced to glue or tape eyes open just so she can see
A 21-year-old has shared how she has to tape her eyes open in order to see due to a rare condition.
Two years ago, Tia-Leigh Streamer developed blepharospasm, a neurological disorder in which those living with it suffer from involuntary eyelid twitches that in extreme cases like Streamer's, result in sustained closure of the eyelids.
It is characterized as 'functional blindness', which the Brit explains: "I have the same level of sight as a visually impaired person but I've got nothing wrong with my eyesight."
Blepharospasm can develop due to a combination of factors, including genetics, environmental triggers, and neurological dysfunction.
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There is no cure for the chronic condition, although in some cases it can go away on its own, and while there is not one particular reason for patients developing it, it's thought stress can induce it - as well as genetics.
"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," shared Streamer, of Wimborne Minster in Dorset, England.
"To be told I've got this for the rest of my life and not know why is a hard thing to deal with."
It all began in May 2023, when she awoke from her sleep with a drooping eyelid but put it down to hayfever.
However, doctors were unable to determine what was up with the then-teenager.
It wasn't until December of that year that she received the diagnosis, having woke up unable to open either eye, and has since been prescribed botox to administer to her eyelids in order to keep them from closing.
"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," Streamer continued.
"The more often I have it, at some point my body will get used to the botox 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.
"The rest of the time I have to physically hold my eyelids open to be able to see anything."
Streamer went on: "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.
"I've actually had bruises on my eyelids from the tape before. It's hard because I've either got no sight or one hand essentially."
Her chronic condition has meant that she has been unable to do anything for herself, noting that she has to ask her mom to cook for her and even cut up her food due to the fact that she can no longer see.
"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 adds.
Streamer is now running tests with her doctor to see if there's a way the botox can be effective for longer.
"He might change slightly where he puts the injections and he's going to be monitoring it and seeing how long it lasts," she added.
"It's about hoping he'll be able to find a better balance so we can have some longer effects out of the botox."
Topics: Mental Health, Health, UK News
Joe Yates