Surrey grandmother who sees floating heads of medieval men has rare condition 'that's like a dream'

A grandmother from Surrey says she sees strange hallucinations of medieval men due to a rare condition. Around 17 years ago, an optometrist discovered that Sheila Darzi from Guildford has macular degeneration, an eye disease that can blur vision.

"It's like a dream," Sheila said, adding: "It's really quite weird, there have been people who have called the police because they thought they saw something concerning."

The hallucinations began roughly around six years ago, with Sheila seeing fleeting images of faces of medieval men. She said: "“It’s usually the head and shoulders, sort of medieval looking. Usually ugly men with big noses, open mouths and no teeth and then they morph into something else.

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"More recently I saw a group of ladies’ heads. It’s very confusing, how do you explain it? It’s bizarre.”

The macula is a part of the eye responsible for retaining sharp, clear vision. It's the light sensitive tissue at the back of the eye and when it degenerates over the years, particularly in people over 50, it can cause limited eyesight.

Macular degeneration can cause a host of symptoms including dark spots, blurred vision, distorted lines and light sensitivity. Around 300 people are diagnosed every day in the UK and is the biggest cause of sight loss in the UK with nearly 1.5 million people are currently affected and many more are at risk.

For Sheila, lines looked wriggly if she covered one eye. She also found her eyes would take time to adjust between light and shade.

The 87-year-old retired social worker said: “I realise you don’t go entirely blind with my macular condition, but you do lose your central vision, and I didn’t take that seriously until I started having my follow up hospital appointments after my diagnosis. I realised how serious this is, experiencing that loss and it is like any kind of bereavement. I thought ‘why did it happen to me?'"

Currently, Sheila has a macular hole, which is where the macula has torn. As the macula is an important part of the retina, it sends signals to the brain.

Due to the distortion in sending signals, the brain automatically fills in the blanks. This is why Sheila sees medieval men, Victorian women and yellow and black patterns.

However, the hallucinations are fleeting and can appear at random times. Charles Bonnet syndrome is what the phenomenon of seeing hallucinations is called, strange hallucinations are not the only symptoms Sheila lives with.

No longer able to read without a strong magnifier, books are now a challenge. Sheila said: "Crossing the road at night can get quite scary. And going into supermarkets gets very complex, you can't cope with the huge amounts of light."

Sheila has had to become reliant on her computer to help with reading and writing, and uses Google. Family members are also a great help for Sheila, including her 90-year-old husband, Eli.

Eli will help Sheila with reading instruction manuals, and even her grandchildren aged nine and 13 help. Sheila said: "If we are in a restaurant, my granddaughter says 'I will take you to the toilet granny' and she holds my hand."

Having a support group has been a great comfort to Sheila, as there is no cure for macular degeneration. She said: “It’s the fact that I'm not alone, that we're all in it together.

"We're all very different, but we're all in it together because of our loss of sight loss conditions. We have this particular condition that makes life difficult but sometimes we can have a laugh about it and it makes you feel you feel more secure.”

Sheila says living with an incurable condition can be tricky, as it's possible to get a diagnosis, but other than that there isn't much more that can be done. Certain treatments can be given to prevent further deterioration.

There is one treatment for macular degeneration which is certainly not for the faint of heart. Injections can be administered containing medicines that stop blood vessels from leaking and bleeding, causing vision loss.

Injections can take around a second, so are very quick and can last around three months. Taking vitamins such as vitamins A, C, and E, as well as zinc, copper, and lutein, could slow the progression of the disease.

The Macular Society Support Group meets every third Friday of the month at the Guildford Institute, Ward Street, GU1 4LH from 10.30am to 12.30pm.

For more information about the Guildford group, to become a volunteer, or to register your interest in attending a meeting, please contact Stella Black on 07494 467 980, or email stella.black@macularsociety.org

For general information on macular disease, call the Macular Society on 0300 3030 111 or email help@macularsociety.org