Living with Stargardt disease

Stargardt disease is an inherited condition that affects the retina in both eyes, causing progressive loss of central vision. It usually begins in childhood or early teenage years, and the rate of vision loss varies from person to person. Most people retain their peripheral (side) vision and can get around independently. People living with Stargardt disease will benefit from support to make the most of their remaining sight.

For more information on Stargardt disease, including symptoms, causes, and treatments, visit the Moorfields website.

Living independently with Stargardt disease 

We rely on our central vision for seeing fine details, and for looking straight ahead, which means that sight loss caused by Stargardt disease can significantly impact daily life. There are many practical ways to cope with changes to your vision. For example:

• Use plenty of bright, even lighting in your home 
• Use aids, such as magnifying lenses
• Make the most of assistive technology
• Adopt viewing techniques, like eccentric viewing, to make the most of your peripheral vision

Your ophthalmologist can refer you to a low vision clinic for a low vision assessment (LVA) if you’re living with Stargardt disease. This can help you identify the aids, services, and other support that will help you make the most of your vision and adapt as it changes.

Depending on the progression of your sight loss, you may also find it helpful to contact social services. They can help with mobility and staying safe at home or may be able to put you in touch with a sensory impairment team.

At Guide Dogs, we have a wide range of services, both with and without guide dogs, and a team of experts who can work with you to understand your needs and agree on a plan that’s right for you.

The ways we could help you:

• Habilitation or rehabilitation of important life skills
• Our guide dog service
• Our Vision Rehabilitation Specialists can make recommendations best suited to you and your needs
• Tips and advice to help you make the most of your remaining vision
• Resources and support on how technology can improve your independence

Please note: Whilst Guide Dogs may be able to suggest various third-party websites which may be able to assist you, those are not endorsed by Guide Dogs. Guide Dogs have no control over those third parties and cannot be held responsible for the accuracy of information and support they can provide or the suitability and quality of any products or services they provide.