Shared stories

Two woman sit around a table, arms crossed while smiling

"Volunteering makes me feel worthwhile, I just love helping other people"

Posted: Wednesday 8 January 2025

In 2025, Jenny will have spent 16 years helping out at her local support group for people with macular disease. While she doesn’t have sight loss herself, she joined to follow in the footsteps of her late husband Alan who was a group volunteer.

Jane, left, wearing glasses and a horizontal striped jumper, standing next to her husband Ed. He is also wearing glasses and a red jumper.

“Counselling helped me express all the guilt”

Posted: Tuesday 7 January 2025

For two decades Jane has been dedicated to supporting her husband Ed since his diagnosis with macular disease. While she has always been firmly by his side, Jane admitted she has often felt a great sense of guilt – a feeling which resonates with many friends, family members or carers of people living with sight loss.

Emily, a white female in her 20s with long dark hair, smiling and posing with the Clifton Suspension Bridge in the background

Architecture graduate with Stargardt wants to make buildings more inclusive

Posted: Monday 2 December 2024

A recent architecture graduate who is losing her sight to Stargardt disease, says the experience has motivated her to design everyday spaces that are accessible to everyone.

“Without counselling, I would have been left in the doldrums - I wasn't me anymore”

Posted: Thursday 28 November 2024

From nursery teaching to supporting people with dementia, Caroline had always associated herself as an outgoing and extraverted person - until her sight began to deteriorate.

Gerard McCarten, middle, wearing his yellow Macular Society fundraising t-shirt and red helmet poses with his bike, flanked by his friends Mike Cowley and Ged Brear. Behind, Jericho Primary School children cheer and wave.

"My Mauna Kea challenge was nothing compared to living with sight loss"

Posted: Tuesday 26 November 2024

An avid cyclist has completed a mammoth challenge of cycling the height of the world’s tallest mountain, in memory of his late wife who spent decades living with a rare macular condition.

Headshot of Sheila, grinning while wearing a red top.

"I see the floating heads of toothless, grinning medieval men"

Posted: Saturday 16 November 2024

Visions of medieval figures with open mouths and toothless grins have been some of the vivid images that Sheila started to see following her diagnosis of age-related macular degeneration (AMD).

An illustrative design showing victorian-era women in the middle of a modern street to suggest an hallucination somebody with Charles Bonnet syndrome might experience

Charles Bonnet Syndrome Awareness Day 2024: Your experiences

Posted: Saturday 16 November 2024

Imagine spotting angels perched in trees, an infestation of flies, or even a familiar face from your past appearing in your living room.

Sian with her son, Archie, smiling at the camera

“I hope Archie will never have to worry about losing his sight”

Posted: Monday 11 November 2024

When Sian was first diagnosed with Best disease, a rare genetic eye condition, she was just a child. She barely remembers the details, only that she got a day off school and visited the Tower of London. Decades later, the condition she had almost forgotten about resurfaced - this time, affecting her young son, Archie.