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Macular disease is the biggest cause of sight loss in the UK and age-related macular degeneration, or AMD, is the most common type[i]. There are two types of AMD, known as ‘dry’ and ‘wet’. Currently wet AMD is the only form that can be treated[ii].

Learning that you have a long-term, degenerative disease like AMD can feel devastating and hard to accept at first. People often say their emotions after diagnosis range broadly from anger to acceptance. 

No matter where you are in your journey with AMD, you can find comfort, control and independence by planning for ways to live with changing vision. For many people, this starts with building or expanding a dedicated support network. It is also important to make the most of the time you get with your eye care team, so take this quick questionnaire and download your appointment guide.

Below are some steps recommended by people living with AMD for building a group of friends, colleagues, and public and private organisations that can help with your daily and longer-term needs.

1. Tell those around you about your diagnosis
While your initial instinct may be to shield your friends and family from the news, the best way to get the support you need is to be honest and open about your condition. If you work outside the home, talk to your employer or seek advice from support organisations like the Macular Society on any special accommodation you might be able to make.

2. Understand your needs
Before you start building your network, make a list of all the tasks where you think you will need help. These may include transport to appointments and trips to the supermarket, monthly bill paying, or help with the caregiving responsibilities for a relative or friend that you have been supporting. Also consider your emotional needs. For example, you might find it boosts your spirits to get a daily check-in call from a caregiver.

3. Create a budget for care
Once you have a list of tasks, put together a monthly budget to understand which support services you might wish to pay for, taxis to and from appointments for instance, and what support a friend or family member may be able to help provide, such as help organising your bills or joining you on your weekly trips to the supermarket.

You can also seek additional support while at the supermarket by asking the customer services desk for a helping hand. Read our tips for stress-free shopping here.

"Be as specific as possible in describing the tasks you need help with."

4. Recruit your network
Speak with friends, neighbours and relatives to ask for their support and recommendations. Be as specific as possible in describing the tasks you need help with and how frequently you will need them. Through open and honest conversation, you can help those around you to help you in the best possible way.

5. Document the help you can expect
Create a list showing which caregivers are helping you and when. Print their names and contact information in large print and keep it handy. You should also ask your caregivers if you can share their contact information with other individuals in your support network. Easy ways to do this are with a group email list or group text message.

6. Additional support sources
As a long-term and degenerative eye disease, wet AMD can have a devastating impact on the lives of those diagnosed and the people around them. This can be especially difficult during this exceptional time, when access to services may be affected and people might need to self-isolate. Ask your eye specialist about local organisations and groups that provide services for people living with AMD. For example, in the UK the Macular Society offers information and a range of support services, including a telephone advice and information service and virtual meet-ups, to those affected by AMD as well as their caregivers. Visit macularsociety.org for more information or call them on 0300 3030 111 for support and information.

You can also get in touch with your eye specialist for an assessment if you’d like to be registered on the local social services as someone who has sight problems. They can determine whether you can be registered and complete an official certificate with the results of your eye examination, as well as information about your circumstances. In England and Wales this certificate is called the ‘Certificate of Vision Impairment’ (CVI) and it allows you to register with your local social services for financial support[iii]. Further information is available at https://www.nhs.uk/conditions/vision-loss/.

Don’t be afraid to ask for help. Together, you and your support team will learn the best ways to live with changing vision.

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[i] Quartilho, A et al. Leading causes of certifiable visual loss in England and Wales during the year ending 31 March 2013. Eye vol. 30(4), 602-607. 2016.

[ii] Macular Society. Treatments. Available at: https://www.macularsociety.org/diagnosis-treatment/treatments/. Last accessed January 2021.

[iii] NHS. Blindness and vision loss. Available at: https://www.nhs.uk/conditions/vision-loss/. Last accessed January 2021.

Page-Specific Approval Code UK | February 2021 | 107567