Supporting knowledge, confidence, and advocacy for people affected by Diabetes-related Eye Disease
This educational toolkit provides clear, accessible information on diabetes-related eye diseases, including their causes, symptoms, diagnosis and treatment options. Designed for people living with diabetes, their families, eye care professionals and advocates, it aims to raise awareness, support early detection and screening, improve access to care, and promote research and innovation to help prevent avoidable vision loss.
A Patient-Centred Introduction
A DED diagnosis can raise many questions:
- How does diabetes affect my eyes?
- What symptoms should I look out for?
- How often should I have my eyes checked?
- What treatments are available?
- Can vision loss be prevented?
- How can I advocate for better diabetes and eye care?
This toolkit provides clear, accessible information to help people affected by Diabetes-related Eye Diseases understand their condition and make informed choices throughout their journey.
What are Diabetes-related Eye Diseases?
Diabetes-related eye disease refers to a group of eye conditions that can occur as a result of diabetes affecting the structures of the eye, particularly the retina.
The retina contains a network of tiny blood vessels that can become damaged when blood glucose levels remain elevated over time. These changes may affect vision and, if not detected and managed, can lead to significant vision impairment.
Diabetes-related eye disease includes several conditions, including:
- Diabetic retinopathy
- Diabetic macular oedema
- Diabetes-related cataracts
- Diabetes-related glaucoma
Early detection, regular eye examinations, and access to appropriate treatment can help protect vision and improve outcomes.
Types of Diabetes Related Eye Disease
Diabetic Retinopathy
Diabetic retinopathy occurs when diabetes damages the blood vessels of the retina.
Diabetic Macular Oedema (DME)
Diabetic macular oedema occurs when fluid builds up in the macula, affecting central vision.
Other Diabetes-Related Eye Conditions
Including:
- Cataracts and diabetes
- Glaucoma and diabetes
DED Key Facts
What Is Diabetes?
Diabetes is a chronic condition that affects multiple organs and systems, including the heart, kidneys, nervous system and eyes. It occurs when blood glucose levels are too high because the body does not produce enough insulin or cannot use insulin effectively. Insulin helps glucose move from the blood into the body’s cells, where it is used for energy.
Types of Diabetes
There are three main types of diabetes:
- Type 1 diabetes: Accounts for approximately 5–10% of diagnosed cases.
- Type 2 diabetes: Accounts for approximately 90% of diagnosed cases.
- Gestational diabetes: Develops during pregnancy and affects approximately 1 in 7 births globally.
Other, less common forms include monogenic diabetes and secondary diabetes caused by other conditions, such as hormonal disorders.
Categories
Diabetes-related eye diseases develop when prolonged high blood glucose levels damage or disrupt the normal function of the eye. They include:
- Diabetes-related retinopathy
- Diabetes-related macular oedema
- Diabetes-related cataract
- Diabetes-related glaucoma
- Diabetes-related uveitis
- Diabetes-related keratopathy
- Diabetes-related dry eye syndrome
These conditions can occur together, and a person with diabetes may develop more than one.
Diagnosing Diabetes
The World Health Organization (WHO) identifies the following blood glucose and HbA1c thresholds for diagnosing diabetes:
- Fasting plasma glucose of 7.0 mmol/L (126 mg/dL) or higher.
- Two-hour plasma glucose of 11.1 mmol/L (200 mg/dL) or higher following a 75 g oral glucose tolerance test.
- Random plasma glucose of 11.1 mmol/L (200 mg/dL) or higher, or HbA1c of 48 mmol/mol (6.5%) or higher, where applicable.
Global Prevalence of Diabetes
According to the International Diabetes Federation’s 2019 Diabetes Atlas, nearly 500 million adults worldwide were living with diabetes. At the time, this figure was projected to reach 700 million by 2045.
Managing Diabetes and Eye Health
Long-term poor blood glucose control can increase the risk of developing diabetes-related eye diseases (DEDs). Regular eye screening and effective diabetes management, including blood glucose control through diet and medication, can help prevent or slow the progression of some complications. Early intervention is particularly important.
Complications and Disease Progression
Diabetes-related eye diseases can interact and influence one another. For example, advanced diabetic retinopathy may occur alongside diabetic macular oedema or certain types of glaucoma. Steroid treatments used for some eye conditions can also increase glaucoma risk, while cataract surgery may affect existing retinopathy or macular oedema. Diabetes-related retinopathy is a major cause of vision loss among working-age adults, highlighting the importance of regular screening and timely treatment.
Screening & Eye Care for DEDs
Early detection is essential
Screening can identify diabetes-related retinopathy before symptoms appear, helping prevent avoidable vision loss.
Type 1 diabetes
An initial dilated eye examination is generally recommended within 3–5 years of diagnosis, after age 10, followed by regular examinations.
Type 2 diabetes
An initial dilated eye examination is recommended soon after diagnosis, with regular follow-up.
Individual screening schedules
Annual examinations are common, but more frequent checks may be needed if retinopathy is detected or progresses.
Pregnancy and diabetes
Women with pre-existing diabetes should have an eye examination before conception or early in pregnancy, with follow-up based on the severity of retinopathy.
Gestational diabetes
Routine diabetic retinopathy screening during pregnancy is generally not required solely because of gestational diabetes.
Guidelines vary
Screening recommendations differ between countries depending on healthcare resources, services and clinical guidance.
Timely referral and treatment
Abnormal screening results should lead to appropriate eye care, further assessment and treatment when needed.
DED Patient Experience
Adjusting Your Life To Low Vision
Low vision can affect reading, mobility, work, travel and relationships. Accessing the right support and tools can help you adapt and maintain independence.
Reading: Magnifiers, electronic devices, smartphone accessibility features and audiobooks can make reading easier. A vision rehabilitation professional can help identify suitable options and support services.
Safety and mobility: Orientation and mobility training can help reduce the risk of falls and make moving around at home, work and outdoors safer. Your healthcare provider or local sight loss organisation can help you find training.
Travel: Planning ahead can make travelling with vision loss easier. Explore travel resources for people with vision impairment for advice on planning, assistance and traveller rights. In Europe, eligible passengers can request assistance when travelling by air, rail or sea. Contact your transport provider in advance to arrange the support you need.
The Importance of Sensitive Language
Language used when discussing diabetes can contribute to stigma, blame and feelings of guilt, shame and isolation, negatively affecting emotional wellbeing and social life. Using respectful, inclusive and non-judgmental language helps preserve dignity and avoid defining people by their condition. Healthcare professionals, researchers, writers and the wider public should use factual, empowering language that supports positive communication, motivation and wellbeing.
Patient Support Groups
Australia
– Vision Australia: http://www.visionaustralia.org
Canada
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Canadian National Institute for the Blind (CNIB): http://www.cnib.ca/en/Pages/default.aspx
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World Blind Union: http://www.worldblindunion.org/English/Pages/default.aspx
France
– OPC Preserving Sight: http://www.opc.asso.fr/?lang=en
Ireland
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Fighting Blindness: https://www.fightingblindness.ie
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Sightsavers: https://www.sightsavers.ie
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CBM: http://www.cbm.ie
United Kingdom
– Royal London Society for Blind People: http://www.rsbc.org.uk
United States of America
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American Council of the Blind: http://acb.org
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Lighthouse Guild: http://www.lighthouseguild.org
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VisionAware: https://www.visionaware.org/default.aspx
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Foundation Fighting Blindness: http://www.blindness.org
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Orbis International: http://gbr.orbis.org/en
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SEE International: https://www.seeintl.org
Other Resources
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All About Vision — directory of organisations supporting people with vision impairment: http://www.allaboutvision.org
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Live Well with Diabetes — links to support groups in various countries: http://livewellwithdiabetes.com/home/Groups
Knowing what you can do to improve your outcome is critical.
Here is Oliver’s story.
I was diagnosed with type 1 diabetes in 1978 when I was 31 years of age.
I have always kept myself informed and up to date regarding developments for treatment of diabetes and the complications arising therefrom including eye damage.
I carefully manage my diet, exercise daily and monitor my blood sugars to tailor my insulin requirements accordingly.
Over the years there have been advances and simplification in the checking of blood sugar levels. Gone are the days when a blood glucose test took 5 minutes and required repeated needle use, nowadays a scan takes only 1 second with a reader and no needle use.
Throughout my life I have had good sight and began attending check-ups with my ophthalmologist 18 years ago. Now I have six monthly appointments to see my ophthalmologist and have been diagnosed with diabetes-related retinopathy in both my eyes. However, this has not impinged on my life style in any way, except for night time driving when the glare of headlights can be blinding.
My ophthalmologist tells that there is some age related deterioration in vision. I need spectacles for reading and driving only.
I also attended the public eye screening programme where I was offered eye injections in one eye but my ophthalmologist tells me that this not immediately necessary.
Because of my diligence over the years in adhering to diet, monitoring my blood sugar levels and injecting insulin as required the diabetes did not interfere with my work life/social actives/hobbies in any way. The fact that my work colleagues and family were aware of my condition did give me confidence over the years. My work did not involve manual/physical activity and this may have been an advantage in managing my condition.
I regularly read and keep up to date with the diabetes population through a moderated online forum which enhances my awareness of the complications associated with diabetes and the different resolutions people pursue. I believe there is good awareness in the population of the complication of diabetes. However, because of the usually quicker diagnosis and treatment of type 1 diabetes the complications can be minimal. I believe with type 2 diabetes the symptoms are usually milder and less severe possibly leading to a delay in diagnoses and complications including eye damage which may have set-in before treatment starts, and this damage may be irreversible.
With the advent of internet patients with diabetes can be better informed of research and progression in treatments.
I believe regular attendance with endocrinologist and ophthalmologist is vital for happy, healthy living.
Oliver.
Checking Your Eye Health
The Amsler Grid
This is a test for macular degeneration. You may use it to monitor your vision between visits to your ECP. The test consists of a grid of squares. Wearing your normal corrective lenses you test each eye one at a time. With one eye covered and the grid at arm’s length from you, look at the centre of the grid. If your eye is functioning properly, you should be able to see the centre white dot and the four corners and sides of the grid. The lines should appear to be straight and continuous from top to bottom and side to side. Any or worsening distortion in the grid should be discussed with your ECP.
It is worth noting that reading glasses may interfere with the grid. If you wear glasses consult with your ECP to establish a baseline view of the Amsler Grid against which any changes and deterioration may be measured.
The Ishihara Test
This is a colour perception test for red-green colour deficiencies. The test consists of a number of coloured plates, called Ishihara plates, each of which contains a circle of dots appearing randomized in colour and size. Within the pattern are dots which form a number or shape clearly visible to those with normal colour vision, and invisible or difficult to see to those with a red-green colour vision defect. Other plates are intentionally designed to reveal numbers or shapes only to those with a red/green colour vision deficiency, and to be invisible to those with normal red/green colour vision.
Visual Acuity Test
Typically performed using a standardized Snellen chart, this is an eye exam that checks how well you see the details of a letter or symbol from a specific distance. Visual acuity refers to the ability to discern the shapes and details of the things you see. You may need an eye exam if you feel you’re experiencing a vision problem or your vision has changed. Children frequently take visual acuity tests. Early testing and detection of vision problems can prevent issues from getting worse. Optometrists, driver’s license bureaus, and many other organizations use this test to check your ability to see. Visual acuity is expressed as a fraction: having 20/20 vision means that your visual acuity at 20 feet away from an object is normal. A person with 20/40 vision must be 20 feet away to see an object that people can normally see from 40 feet away.
Eye Care Professionals
Optician
A health care professional who is trained to supply, prepare, and dispense optical appliances through interpretation of written prescriptions. An optician fits and finishes eyeglass lenses and frames and may also dispense low vision devices, contact lenses, and artificial eyes.
Optometrist
A healthcare professional who specializes in function and disorders of the eye, the detection of eye disease, and some types of eye disease management. An optometrist conducts eye examinations, prescribes corrective contact lenses and glasses, and diagnoses and treats eye diseases and disorders.
Ophthalmologist
A medical physician who specializes in the medical and surgical care of the eye and the prevention of eye disease. An ophthalmologist diagnoses and treats refractive, medical, and surgical problems related to eye diseases and disorder.
Orthoptist
An allied health professional involved in the assessment, diagnosis, and management of disorders of the eyes, extra-ocular muscles and vision. Orthoptists are an important part of the eye care team and work in close association with ophthalmologists, usually in a hospital based setting. They are involved in many areas of care, including paediatrics, neurology, community services, rehabilitation, geriatrics, neonatology and ophthalmic technology.
Questions for your HCP
What is my diagnosis? / How will my vision be affected?
A doctor will not be able to give you an exact answer to this question, as everyone is different, and conditions can progress at different rates in different people. They will be able to tell you which parts of your vision are most likely to be affected, for example, your central vision or peripheral vision.
How will it affect my home and work life?
The doctor may be able to give you an example of how the condition will affect an everyday task such as reading or driving.
What is the short-term and long-term prognosis for my disease or condition?
Many conditions will cause your vision to change over time. A doctor will not be able to give you an exact prognosis or time line but may able to give you an idea of what can happen in the short and long term in most cases of your condition.
What caused the disease or condition?
Your condition may be genetic and be influenced by a variety of environmental factors.
Are there local agencies or organisations that can help me learn more about my condition and vision loss?
There may be an organisation or support group that deals specifically with your condition or may be able to give you more information.
Patient Experience: The Importance of Advocacy
What is advocacy?
Advocacy means publicly supporting a cause, raising awareness, and calling for change.
Why is advocacy important?
Advocacy helps people affected by retinal conditions have their voices heard, influence policies, improve access to treatments and services, and support research and development.
Types of advocacy
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Self-advocacy: Speaking up for your own needs and rights.
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Citizen advocacy: Working with others to raise awareness and influence change.
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Independent advocacy: Getting support from someone who can help you express your needs and access services.
Advocacy in practice
Advocacy can involve speaking with healthcare professionals about diagnosis and care, seeking access to support services, or working with patient groups to campaign for change locally and nationally.
Retina International advocates for research, better access to therapies, and the meaningful involvement of people affected by retinal conditions in decisions that impact their lives.
Public Patient Involvement (PPI)
Patients as partners
PPI means working with or by patients and the public, rather than conducting research to or about them.
Involvement at every stage
Patients and the public can help set research priorities, design and manage studies, interpret findings, share results and support their implementation.
Research that reflects real needs
Lived experience helps identify relevant research questions, meaningful outcomes and treatments that make a difference in everyday life.
Better decisions and value
Patient involvement can help make research and healthcare services more effective, relevant and cost-effective by considering the wider impact of retinal conditions, including vision loss on daily life.
Patient empowerment
Empowered patients have the knowledge, confidence and skills to make informed decisions, manage their health and work in partnership with healthcare professionals.
A role in advocacy and policy
Patients and patient organisations can help influence healthcare policies, improve access to diagnosis and treatment, and ensure the patient perspective is represented in decision-making.
Health literacy matters
Clear, accessible and reliable information helps people understand their condition, assess their options and make informed health decisions.
Working together for change
Retina International supports collaboration across the global retinal community to promote meaningful patient involvement and improve outcomes for people affected by retinal conditions.
Practical tools to support your education journey
What is Patient Experience
This RI task force aimed to develop consensus on policy priorities for AMD across three countries, identifying opportunities for collaboration and action at local, regional and global levels. Its deliverable was a set of policy recommendations for people living with AMD.
What is PPI
Patient and public involvement – commonly shortened to PPI – is a framework to give lay people an effective and active role in all forms of “healthcare research”.
Retina International Advocacy Toolkit (PDF)
This comprehensive resource has been designed to provide a framework for creating and implementing advocacy strategies – from picking your particular battle, gathering & generating the information (data) to support it, to deciding on the most effective lobbying avenues available to you.
Retina International Advocacy Toolkit (Word Format)
This comprehensive resource has been designed to provide a framework for creating and implementing advocacy strategies – from picking your particular battle, gathering & generating the information (data) to support it, to deciding on the most effective lobbying avenues available to you.
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