AMD Toolkit

VISIT WEBSITE

Brief Summary: AMD

Symptoms: Blurring of central vision, distored vision, scotomas, reduced contrast sensitivity
Diagnosis: Dilated eye examination, retinal imaging
Treatments: Anti-vascular endothelial growth factor (anti-VEGF) therapy

What is Age-related Macular Degeneration?

Age-related macular degeneration is a disabling eye condition that causes gradual decline of central vision. It affects a central area of the retina known as the macula, which is responsible for sharp central vision required for everyday activities such as reading, watching television, driving and facial recognition. Although age-related macular degeneration does not usually lead to complete blindness (peripheral vision is maintained), loss of central vision can severely impact a person’s independence and quality of life.

Age-related macular degeneration is a complex disease and is thought to have several different causes, stemming from a variety of genetic and environmental risk factors. Non-modifiable risk factors include age (increasing), race (white European), sex (female), family history & genetics (first degree relative). Modifiable risk factors are smoking, diet (several eye health cookbooks have been written by professionals in the field), physical activity and hypertension.

It is generally thought that development and progression of AMD is caused by a complex interaction of metabolic, genetic and environmental risk factors; the mechanisms and interactions are not fully understood.

RISK FACTORS FOR AMDGENETIC FACTORS AND AMD
Visualisation of AMD Symptoms

Symptoms of Age-related Macular Degeneration

Early and Intermediate age-related macular degeneration

People with early and intermediate stages of AMD do not usually experience symptoms. Therefore, regular eye examinations are very important to detect any early signs of AMD. These examinations also allow the detection of other eye diseases, many of which may also be painless and without obvious symptoms in their early stages (e.g. glaucoma).

Late age-related macular degeneration

Common symptoms reported by people with late-stage age-related macular degeneration, either geographic atrophy or neovascular age-related macular degeneration include:

Blurring of central vision/Loss of visual acuity (gradual or rapid onset) – reduced ability to see in detail (e.g. greater difficulty reading small print). Tends to occur gradually in people with geographic atrophy, but can be rapid in people with neovascular age-related macular degeneration; may affect one or both eyes. Geographic atrophy and neovascular age-related macular degeneration may occur alone, separately in each eye or simultaneously in the same eye.

Metamorphopsia – Distorted vision where straight lines in a grid appear wavy; this is a common symptom among people who have neovascular age-related macular degeneration.

Blind spots (scotomas) in the central field of vision – Partially altered areas in the visual field, consisting of a partially diminished or entirely degenerated visual acuity surrounded by a field of normal or relatively well-preserved vision.

Reduced contrast sensitivity – difficulty seeing an image against a ‘similar’ background.

Delayed dark adaptation – difficulty adjusting vision when moving from bright to dimly lit environments.

FOR PROFESSIONALS

The symptoms of age-related macular degeneration vary widely between patients. A recent study found that images commonly used to represent age-related macular degeneration (a patch of distortion or blackness in central vision surrounded by a clear periphery) did not provide a realistic representation of people’s experiences. The findings have significant ramifications for individuals, as it may lead them to misunderstand the severity of their own condition and affect how people monitor their own disease progression. Additionally, images used to educate the public about vision loss due to age-related macular degeneration are potentially misleading as they do not represent the lived experience.

There is a need to develop more realistic images of the visual symptoms of age-related macular degeneration for both patient and public education.

LITERATURE - SELF-REPORTED DESCRIPTION OF VISION LOSS IN AMD

RETINA-AMD.ORG

VISIT WEBSITE

285 million people all over the world are living with severe vision loss, a significant proportion of which is due to retinal dystrophies. For individuals and families who have been diagnosed with a retinal dystrophy, access to relevant, detailed and clearly understandable information is essential.

The age-related macular degeneration toolkit aims to provide timely, relevant and accurate information to patients, their families and professionals (Eye Care Professionals, Advocates) on age-related macular degeneration (AMD) and geographic atrophy (GA). The site has been developed to help individuals and their families with a diagnosis of wet age-related macular degeneration, dry age-related macular degeneration/geographic atrophy and inherited age-related macular degeneration to understand the disease and prepare themselves to care for their eyes in the future.

It has also been developed to provide professionals with clear and concise information on wet age-related macular degeneration, dry age-related macular degeneration/geographic atrophy and inherited age-related macular degeneration, in particular to provide them with the relevant information to advocate for improved services for affected individuals including better screening practices, as well as funding relevant research to support the design and development of novel therapies.

This site has benefited from input from a wide range of individuals and organisations that supported development and review of content, and website design and testing. Images and videos have come from a wide range of organisations, including the National Eye Institute at the National institutes of Health, Fighting Blindness (Ireland). This site has been supported by an unrestricted educational grant from Roche and Novartis.