Online support for early onset macular degeneration

Posted: Monday 08 January 2024
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A new support group for people with early onset macular degeneration – a condition many often confuse with early age-related macular degeneration (AMD) – will launch next month.

The group is the latest in a series of virtual groups to help those living with rarer forms of macular disease.

What is early onset macular degeneration?

Early onset macular degeneration (EOMD), also sometimes called early onset macular drusen, is a rare form of macular degeneration which begins to affects individuals at a younger age, compared to AMD.   

AMD mainly affects the elderly, however some individuals develop changes in the macula including drusen, at a much younger age. Consequently, these patients often develop the vision‐threatening end stages of the disease earlier in life. Its early onset suggests a prominent role for genetic rather than environmental factors in its development and it is also seen to run in families.

EOMD is not the same as early AMD

Due to its name, the condition is often confused with early AMD, but the two forms of macular disease are different.

Unlike EOMD, early AMD is associated with older age (usually over the age of 55) and various risk factors including smoking and diet, rather than solely genetics.

The support group

The new support group will provide a welcome chance for those affected by EOMD to meet others with the same condition, and similar experiences.

Colin Daniels, manager of the Macular Society’s Working Age and Young People’s Service, said: “We now have a series of online support groups available to people with less common forms of macular disease.

“We know that when people are diagnosed the most valuable support comes from others going through similar experiences. These groups have proved so useful to everyone, whatever stage of diagnosis they are at.”

The first EOMD support group meeting will be held on Thursday 8 February via Zoom.

 Register your interest now

Or hear more about EOMD from researcher Rachel Taylor in the video below:

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The Macular Society's Working Age and Young People's service supports people with macular disease who may not have reached retirement age.