A WOMAN is forced to take or glue her eyelids to keep them open and can’t blink after being struck by an ultra rare condition.
Tia-Leigh Streamer assumed she had hayfever when she awoke with a drooping eyelid in May 2023 – but both her GP and doctors at Southampton hospital were stumped by what could have caused it.
Tia-Leight Streamer, 20, woke up in December 2023 unable to open her eyes[/caption]
She was diagnosed with a rare condition called blepharospasm[/caption]
She gets Botox to be able to open her eyes but has to hold them open herself when it wears off[/caption]
The Botox injections only last a few weeks so Tia-Leigh often feels helpless[/caption]
PIC FROM KENNEDY NEWS AND MEDIA (PICTURED: TIA-LEIGH STREAMER, 20, HOLDING OPEN ONE OF HER EYES TO SEE) A trainee accountant has to inject herself with Botox just to open her eyes – and TAPE or GLUE her eyelids open when it wears off. Tia-Leigh Streamer assumed she had hayfever when she awoke with a […][/caption]
Then, December 2023, the terrified 20-year-old woke up unable to open either eye.
She was referred to a specialist, who said she may have a rare eyelid condition called blepharospasm.
Doctors at Royal Bournemouth hospital gave Tia-Leigh Botox injections in her eyelids in March 2024 and since she hasn’t been able to open her eyes without the jabs.
When they wear off after a few weeks, the only way she can see is by taping and gluing her eyelids or holding her eyes open with her hands.
Even when the Botox is effective, sunlight, car headlights and computer screens can trigger Tia-Leigh’s eyes to close.
Blepharospasm is a condition where the muscles around the eyelids develop an involuntary spasm, causing the lids to twitch, flutter or blink uncontrollably.
In severe cases, sufferers may be unable to open their eyes due to excessive eyelid spasms.
There’s currently no cure for the condition.
For the time being, Tia-Leigh’s doctors are trialling different volumes of Botox in her eyelids.
Tia-Leigh, from Wimborne Minster, Dorset, said: “I have the same level of sight as a visually impaired person but I’ve got nothing wrong with my eyesight.
“I know it’s neurological but [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.
“To be told I’ve got this for the rest of my life and not know why is a hard thing to deal with.
“I’ve not been coping very well. I was prescribed antidepressants half-way through it. I didn’t get along with them. 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 was training to be an accountant before her condition set in[/caption]
But now computer screens can set her condition off[/caption]
She often gets bruises from taping her eyes open[/caption]
Having to manually open her eyes means she often can’t fend for herself[/caption]
“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.
“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.”
Plans dashed
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.
Tia-Leigh said: “I was training to be an accountant and then as soon as I got ill I was basically told that this was something that I could never do because of the computer screens.
“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.
“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.
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
Tia-Leigh Streamer
“I think the main thing I struggle with is the freedom side of it. I can’t be independent as much anymore.
“If my eyes are closed I don’t go out unless I can get someone to drop me somewhere.
“But I don’t leave the house on my own or go out on my own because I get too anxious not being able to see. I’m basically inside most of the time.
“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.
“It’s then having to ask my family to make my meals, even to the point where my mum has to cut my food up for me.
“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.”
Tia-Leigh says she feels like she’s gone back to being a child[/caption]
She scared about being able to fend for herself and have children in the future[/caption]
Tia-Leigh is having different amounts of Botox trialled to see what works[/caption]
She hopes to find a better balance with her condition[/caption]
‘Trial and error’
She got married in December 2024 and had to time her Botox injections to ensure she could see on her wedding day.
Tia-Leigh said: “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.
“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.
“It [having a baby] is something that I worry about and I often have nightmares about it to be honest because even when I have Botox done, at night-time my eyes don’t open.
Blepharospasm explained
Blepharospasm is when uncontrollable muscle twitches or spasms force your eyelids closed.
Frequent blinking and uncontrollable eye closure are common characteristics of blepharospasm.
When it’s severe, the spasms can be enough to keep you from seeing.
Research shows blepharospasm is mainly a neurological issue.
Some people find that their blepharospasm is made worse by things such as bright light, stress, and social interactions.
While this condition is rare, it’s also very disruptive.
It typically develops in the mid-50s and affects five in every 100,000 people.
Symptoms include:
- Forced closing of the eyes
- Inability to open the eyes
- Blurry vision
- Sensitivity to light
- Dry eyes
The condition can be treated with Botox injections into the eyelid muscles.
A surgical procedure to remove the muscles and nerves in the eyelids, known as myectomy, can sometimes be used.
Sources: Cleveland Clinic, King Edward VII’s Hospital
“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.
“After speaking to my doctor, it’s going to be a trial and error year where he’s going to change the volume of the Botox in the top and bottom lid of my eyes.
“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.”
