Living with LHON

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Living with LHON

Whatever your reaction is to living with LHON, you will likely have lots of questions. For the majority of people a diagnosis is unexpected so it can take a while to find out what can help, what you are entitled to and how you can resume your lifestyle.

Here we aim to provide information and sources of support that go some way to answering some of the questions you may have.

Emotional Support

Everyone responds differently to a sight loss diagnosis. Most people feel a whole host of emotions and often talk about a sense of isolation. It is important to remember that you are not alone and there are people who you can talk to, many of whom have had similar experiences.

Peer Support

Opportunities exist to meet people with shared experiences in the social media world and the real world! You may also like to read about what others with LHON get up to and how they manage certain tasks.


As LHON tends to affect people in the early part of their life work is often a consideration, or even a concern. Sadly, it is true to say acquiring work will likely be more difficult, but it is also true to say that people with LHON work in lots of different roles and sectors. Support is available and you have employment rights.

Assistive Technology and Low Vision Aids

Technology is constantly developing to improve the lives and opportunities for people with sight loss. If you are new to living with LHON you will probably be unaware of how lots of tasks you think are not possible anymore can be achieved. Even if you have had LHON for some time you may not be aware of the latest gadgets on the market.

Registration and Welfare

People with LHON usually meet the criteria for registration and are usually entitled to some state benefits.

Getting Out & About

Traveling independently may seem daunting at first, but it gets easier the more you do it and support is available.

Other Organisations 

There are lots of organisations that exist to provide support and offer information. It is worth knowing what is out there.