A woman has shared her terrifying reality of potentially going blind at any moment due to living with an incurable tumour.
When Amber Manning was approached for a few local modelling jobs, she thought her dreams were finally coming true.
But it was all taken away from her in an instant when soon after, she began experiencing blurred vision – before everything suddenly went black.
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The 27-year-old, from West Yorkshire, rushed to hospital and was told a five-pence-sized incurable tumour was pushing on her optic nerve.
“It’s a real struggle to survive each day without fear,” the model told Need To Know.
“From the minute I wake up, I worry if I’m going to have my sight.
“Sometimes, I open my eyes and everything is completely black.
“There’s no light – and I grow very fearful that the last time I got to see was before I went to bed.
“Usually, though, this comes back after a few hours.
“But there’s been a couple of occasions where it’s taken a few days; and that’s been terrifying.
“I get a rollercoaster of emotions all in one but it’s overwhelmed by intense anxiety wondering how I would cope if I did lose my sight for good.
“I’m only limited to what I can handle on my own.
“I’ve learned the feeling of where things are in my house, so I know how to get around if it ever did happen
“But I’m living in debilitating fear each day.”
Amber, who says her loss of sight is sometimes brought on when concentrating, also suffers from memory loss – and a change in behaviour.
She said: “My memory is all over the place.
“I forget names, misplace things and sometimes people’s birthdays.
“Luckily, it’s not caused any riff, only a few awkward interactions.
“The first warning sign there was something wrong was a change in my behaviour.
“It’s still something I struggle with now.
“I never know which version of Amber I’m going to get.
“It’s unpredictable on a regular basis, which makes it difficult to go out in public.
“I find it hard to express my emotions, so I don’t understand people’s opinions or reactions to my behaviour.
“It makes it very difficult to communicate effectively and is quite distressing to deal with.
“I’m doing all I can to put up some boundaries and find the ‘off switch’ but that’s not always possible.”
Amber says that her behavioural outbursts have led to the breakdown of some relationships.
She no longer speaks to those who were “ignorant” toward her condition; but is grateful for those who understand and give her space.
As the tumour is pressing against her pituitary gland, her mobility has taken a toll, as well her often having seizures.
She said: “My legs sometimes lose feeling completely, causing me to collapse.
“I often struggle to get out of bed.
“And I have a constant, debilitating pain near my spinal cord, which only makes things harder.
“There’s also the seizures, which can be life-threatening.
“The last one I had was a tonic seizure that lasted more than 10 minutes – but luckily, someone was with me at the time.
“I have to be more cautious about going out in public, as I have no control over what my body might do next.
“Sometimes, I worry I’ll have a seizure and it could be the end of my life.
“It’s a never-ending battle.”
Amber initially experienced blurred vision six years ago while on a photoshoot.
But her symptoms actually started when she was only 16, such as the aforementioned behaviour changes and “horrendous” headaches.
Though, it wasn’t until she lost her sight entirely for five minutes on three separate occasions that she became “desperate” for a diagnosis.
After a brain scan, the aforementioned tumour was confirmed in December 2019.
She said: “I was in complete shock.
“But I felt relieved to finally have an answer for my worrying symptoms.
“Luckily, it was non-cancerous and possible to shrink.
“However, since it was quite small and in a very risky area, removing it would only cause more harm than good.
“So it’s been left in my body, bringing havoc into my life.”
Amber, determined to not let her condition stop her, battled to find strength.
She’s since modelled across the world, including the US, India, Italy and France and taken part in various competitions.
Sadly, though, in April 2024, she suffered another blow when being diagnosed with lethal lung disease – a form of chronic lung disease that causes permanent scarring.
Although she still finds each day a challenge, the 27-year-old hoped to carry on with her dream of being a model.
And so, she’s created her own business helping other models develop their careers, while raising awareness of her “invisible disease” online.
Sadly, not everyone is so kind.
She added: “The trolls have come out in force to tell me that I don’t look ill.
“They say for someone who is supposed to have a tumour, I seem fine.
“I’ve been told that I shouldn’t be allowed to model, which is so unfair.
“It really hurts and I don’t understand how people can be so cruel.
“I’ve tried to explain about my condition and the side effects, such as seizures, confusion and muscle weakness.
“But I just get called a liar.
“Instead, I’m paying them no attention and focusing on my goals.
“I’m battling this, so I can take on anything life has to throw at me.”
