Charles Bonnet Syndrome

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I suffer from a condition called Charles Bonnet Syndrome, or Visual Release Hallucinations if you want to get more technical.

It's a condition that's far more common than you might realize — it's estimated that as many as half of people with gradual loss of vision will experience one or more bouts over their lifetime. Yet I'm willing to bet that most of you have never heard of it.

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The reason for that is because most sufferers are scared to tell anybody what we experience. I know I was.

But I'm getting ahead of myself. My name is Andrew and I'm 26. Two years ago I woke up with awful blurred vision, every single edge and detail clouded as if somebody had smeared Vaseline on a camera lens. It never got better.

I was scared then, and got over to Doctor Harper's surgery as fast as I could, suddenly needing to take a cab rather than climb in the car I'd driven without incident ever since I'd bought it three years prior.

The doctor did some tests, asked me some questions ('Have you been much thirstier lately?', 'How often do you urinate?', 'How would you describe your tiredness levels?') and then gave me the diagnosis that changed my life forever.

Diabetes.

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Type-One.

He explained that I would need to take insulin shots with every meal, that eating the wrong foods without monitoring my blood sugar could see me drop into a coma — or worse.

Then he got to my eyes.

'Andrew, your diabetes has resulted in maculopathy. Do you know what that is?'

I shook my head dumbly, already reeling with the shock of my diagnosis, and Dr. Harper went on.

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'It's when the diabetes affects the blood vessels at the back of your eye, blocking them and causing them to leak into the macula, the central part of your retina that helps you to perceive color and fine detail. When these blood vessels leak into the macula, it can cause significant damage.'

With a lump in my throat, I asked: 'OK, so how do we make this better?'

I couldn't see Harper's face properly when he spoke, but his tone of voice was enough to tell me what I'd been dreading.

'I'm sorry, Andrew,' he replied gravely. 'Perhaps if we'd caught this a little sooner we might have had some treatment options available to us, but I'm afraid the damage has been pretty extensive. We can take steps to arrest the development of the condition, but I'm afraid it's irreversible.'

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I felt as if my world had come crashing down around me. I was just 24, still at my physical peak. I was active, playing basketball and cycling a couple of times a week. And now my health, my body and my sight had been taken from me.

The first six months were tough. I broke up with my girlfriend, a sweet girl called Holly who tried to make it work but couldn't because I was so damn angry all the time. I lost my job, because if there's one thing an architect needs it's his eyes. I even fell out with a lot of my friends, making excuses to not meet with them until they stopped asking. In truth it was jealousy on my part, envy that they got to keep on living while everything I'd ever hoped for had been snatched away.

I became a recluse, never leaving my apartment, barely bothering to wash, shave or get dressed each day. I was so sure that my life was over, I stopped even trying to live it.

I was an asshole.

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It took me a long time to realize this, but in the end, it was the nurse assigned to visit me at home, a tall, no-nonsense, experienced woman called Lois who brought this to my attention.

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