Newly Diagnosed To-Do List

When you are first diagnosed with macular disease, it can be a shock and you might not know what to do next. You might not even fully understand what your new condition is. This section will guide you in what you need to do. You can carry out these actions in any order you wish and it is important you go at your own pace. There is no right or wrong way.

Understanding your condition

It is important for you to fully understand your condition. There are many resources to help you with this. You can discuss your condition with the person who diagnosed you, however they may not always be available to answer all your questions. You can contact our Macular Society Helpline on 0300 3030 111 to discuss your condition and/or read some of our leaflets.

You might prefer to speak to other people who also have macular disease. We have many support groups where you can do this. We also operate Facebook Groups and monitor a forum on Health Unlocked. On Health Unlocked we have Learning Programmes to help you understand your condition too.

Understanding your treatment

There are a number of macular conditions that can be treated. It is important you know what treatment is available and how urgently you need to receive it. Please visit our Treatment page for more information.

Getting support

A new diagnosis can be overwhelming and there can be many associated emotions. You may feel you need some support with this.

Sometimes talking about your condition can help you feel more at ease - our Helpline are available to answer your questions and concerns.

If you are feeling alone following your diagnosis, you might feel that talking to others will help. You can get in touch with other people via our Support Groups and our Befriending Service.

You might decide that you need more professional support. We offer confidential, one-to-one counselling over the phone. Our counsellors are professionally trained and specialise in sight loss. You can read more and self-refer online via our Counselling page.

Things you need to know

Reading books and using screens will not harm your eyes. You don't need to be concerned about continuing to do the things you enjoy. However, you may need to start using some new tools to help you comfortably do these things. There are lots of low vision aids and settings on technology to help you.

If you drive, it is your responsibility to know if you continue to meet the necessary driving ability requirements. You must have binocular visual acuity of at least 6/12 in at least one of your eyes. If both of your eyes are affected by a sight loss condition, you have a legal obligation to inform both the DVLA and your insurance company. To read more about driving, visit our Driving page.

If you are employed, you may be considering whether and how your job could be affected. We have a Working Age & Young Person's service which can help you understand how to inform your employers, and find out what support is available to help you continue to work.

Telling your loved ones

Many people with macular disease say that one of the most difficult situations to deal with is telling others about it. They are worried about how their family and friends, neighbours, colleagues and other people might react.

However, telling those close to you is often the first step in making sure you get the support you might need.