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A call for re assessment

I believe there is a need to change how we understand central vision loss to look from the point of view of those with this condition.

As discussed on other pages in this website, medical texts, eye health organisations and the general media show central vision loss as a big black spot at the centre of the visual field.

These representations may be very different from the lived experience of  central vision loss.

Why is it important that we reassess our understanding of how central vision loss looks?

Because if we do not understand how vision loss looks from the patient’s perspective we will not adequately gear  our health resources to managing this incurable condition.

Think of all the things we see and do in a day – preparing food, shopping, managing a home, reading books, getting an education, going to work,  using computer equipment, handling money, walking through a street, crossing a road, driving or taking public transport, and spending time with family and friends.

What does doing those sorts of things really look like through the prism of central vision loss?

If we don’t have an informed answer to that, then how can we help those with incurable eye conditions meet those daily challenges?

How do we successfully adapt living conditions, environments, public spaces and transport facilities for those with vision loss?

With a globally increasing ageing population there will be more people with eye conditions like Age Related Macular Degeneration and other diseases of the eye. Time and resources are limited and we need to adapt to new understandings of our changing world.

When I was first diagnosed at the age of 23 with Stargardt’s Disease, my eye specialist could not tell me how the disease and its symptoms might progress, and how the disease might look as my eye sight deteriorated into low vision and legal blindness.

I hope my vision of the world  will help raise awareness amongst medical professionals, eye health organisations and the general public in a way that fosters new understandings of the lived experience of central vision loss.

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