Living with diabetic retinopathy

Diabetic retinopathy is a diabetic eye disease. It occurs when high blood glucose levels damage the blood vessels behind the retina at the back of the eye. Although it can lead to sight loss in advanced stages, regular eye screening can detect the condition early. For most people, having regular eye exams and managing your diabetes will make a big difference, and you may not need treatment or experience vision loss.

You can find more information about the causes, symptoms, and treatments of diabetic retinopathy on the NHS website.

Living independently with diabetic retinopathy

Terry shares his experience of living with diabetic retinopathy.

If you have sight loss due to diabetic retinopathy, there are some actions you can take to help you stay independent at home:

• Use our guide to make the most of the vision you do have. Strategies vary depending on whether your side vision, central vision, or both, are affected.
• Aids such as anti-glare glasses or coloured lenses could help with bright lighting, or tools such as magnifiers can help you better see details.
• Find which lighting works for you.
• Learn new skills and ways to manage day-to-day life at home.
• Approach your local authority to learn how to use a long cane safely and independently. You may also receive an assessment from a physiotherapist to determine your correct cane size.
• Use a symbol cane to let others know you have a vision impairment.

At Guide Dogs, we have a wide range of services, both with and without guide dogs, and a team of experts who can work with you to understand your needs and agree on a plan that’s right for you.

The ways we could help you:

• Habilitation or rehabilitation of important life skills
• Our guide dog service
• Our Vision Rehabilitation Specialists can make recommendations best suited to you and your needs
• Tips and advice to help you make the most of your remaining vision
• Resources and support on how technology can improve your independence

If diabetic retinopathy affects your sight so much that you are eligible to register as vision impaired, and it affects daily life, you may be eligible for support such as Personal Independence Payment.

Working with diabetic retinopathy

You may want to speak to your employer about your diabetic retinopathy. They should make reasonable adjustments for you, such as giving you time to attend your screening appointments or treatment.

If your diabetic retinopathy has led to vision impairment, there may be adjustments that can help make the most of your vision to carry on working. You can talk to your employer about how your vision is affected and the kind of things that may help, for example:

• Changes to lighting and desk set up to control glare and contrast
• Aids such as magnifiers to help with reading
• Larger print for materials or products you use

There's support available from the Access to Work scheme, which gives grants to employers. These cover equipment or services that you need to enable you to work. For example, a grant could be used for transport to and from work, a support worker, specialist equipment, and more.

Driving with diabetic retinopathy

If your diabetic retinopathy is at an early stage and your vision hasn't been affected, you will probably be able to carry on driving. The condition tends to progress slowly, and your regular diabetic eye screening should detect any changes.

If your diabetic retinopathy progresses , and you need to stop driving, it's a good idea to think ahead. Explore your local public transport choices, talk to friends and family, and get support from our Guide Line for getting about with a vision impairment.

If you do experience vision changes, ask your ophthalmologist about driving. They can advise you whether your sight meets the minimum vision standard for driving.

Support for people living with diabetic retinopathy

You might wonder how you'll cope with changes when you've been diagnosed with diabetic retinopathy, especially if you have a more advanced stage of the disease when there is a greater chance of sight loss.

Joining support groups for people with vision impairments can provide a huge resource of practical advice to help manage changes to your sight. Talking to someone who has gone through a similar experience can also help you deal with the difficult feelings that can come with a diagnosis.

Your eye specialist or clinic can also refer you for a low vision assessment (LVA) so that you can get personalised advice and support. Local social services can also advise you about keeping safe at home and getting out and about safely, too.

If you're an existing guide dog owner, or you’re waiting to be matched with a guide dog, we can suggest new strategies within your home or discuss adapting your routes with your cane or guide dog, to help you adjust to any changes in your vision.

Support organisations

• Diabetes UK: This diabetes charity has an information page dedicated to diabetic retinopathy. It explains the different stages of the eye disease and which treatments are available at which stage.
• Fight for Sight: This vision loss charity is dedicated to helping people understand vision loss.