A Guide for Family and Friends

When a close family member or friend is diagnosed with vision loss, it can feel overwhelming for you too. Alongside concern for their wellbeing, you may experience uncertainty, fear, or grief, and feel unsure about how best to help.

Your loved one may worry about losing independence, becoming a burden, or what the future holds for work, education, and daily life. These emotions are natural and can sometimes lead to withdrawal or isolation.

This guide is designed to help you understand how to offer meaningful, respectful support while encouraging independence, confidence, and connection. Support is available and you don’t have to navigate the journey alone.

One of the most important things you can do is listen. Allow your loved one to express frustration, sadness, or fear without judgement or pressure to “stay positive”.

Encourage independence by offering help only when it is needed or requested. Where possible, support adaptive strategies rather than taking over tasks. This helps preserve confidence and autonomy.

Focus on the person’s strengths and abilities rather than limitations. Support hobbies, social activities, and learning new skills. Assistive technology and training can open up many new possibilities.

Remain supportive but realistic. Avoid offering false reassurance and instead share practical solutions, services, and resources that help your loved one live confidently and independently.

Small changes at home can make a meaningful difference. These may include:

• Reducing clutter and keeping walkways clear
• Improving lighting throughout living spaces
• Using high-contrast markings on steps, switches, and furniture

Assistive devices and technology can play a key role in maintaining independence. Smartphones with accessibility features, magnifiers, talking devices, and navigation or reading apps can support daily activities and confidence.

Encourage a healthy lifestyle, including balanced nutrition, routine medical check-ups, and regular physical activity. Participation in parasport activities can also support physical wellbeing, boost confidence, and build social connection.

Read Our Lifestyle Guide for Retinal Patients.

Planning ahead can make travel safer and less stressful. Discuss routes in advance, use navigation apps, and consider appropriate mobility aids such as a cane or guide dog.

When travelling together, offer clear verbal cues and avoid sudden movements that might cause disorientation.

Read our Guide for the Newly Diagnosed – Mobility Training.

At home, help create a simple emergency plan that includes:

• Clear and accessible exit routes
• Emergency contact numbers in easy-to-find formats
• Safety items such as flashlights within reach

Ensure smoke detectors and alarms are working and that pathways remain free of obstacles.

Social isolation can intensify the emotional impact of vision loss. Encourage your loved one to stay connected with friends, family, and peer support networks.

Community involvement – through local groups, faith communities, or online forums – can provide reassurance, shared understanding, and practical advice.

Retina South Africa offers peer support groups and WhatsApp communities where individuals and families can connect, share experiences, and access trusted information.

Retina South Africa provides peer support, genetic testing information, and guidance related to education and employment for people living with vision loss.

We also offer referrals to:

• Low vision service providers
• Orientation and mobility specialists
• Assistive technology trainers

These services help ensure your loved one has access to appropriate support at every stage of their journey.

Read Our Guide for the Newly Diagnosed.

Children with vision loss attending mainstream schools are legally entitled to reasonable accommodation. Parents can request support through the school and the Department of Education.

This may include:

• Extra time for tests and examinations
• Large-print or accessible learning materials
• Assistive technology

Working closely with teachers and specialists is essential.

Learn More About Education and Support for Children and Young People.

Encourage participation in adaptive sports such as blind cricket, tethered running, swimming, or tandem cycling. These activities support physical health, confidence, and social development.

Orientation and mobility training, independent living skills, and social interaction support should form part of a child’s long-term development plan.

Healthy eating, eye protection, and appropriate screen use are also important.

Supporting someone with vision loss can feel uncertain at times, but you do not have to navigate this on your own. Retina South Africa supports individuals, families, and communities affected by genetic vision loss, age-related macular degeneration, and diabetic vision loss.

By becoming a member or friend of Retina South Africa, you are part of a supportive network focused on practical guidance, connection, and progress. Your involvement helps strengthen advocacy, improve access to services, and support research that benefits people living with vision loss.

Members and subscribers receive regular updates on research, assistive technology, community programmes, and parasport opportunities. There are also meaningful ways to get involved, including fundraising or volunteering.

Whether you are supporting a loved one or have a personal interest in retinal eye conditions, your involvement helps ensure no one faces this journey alone.