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.
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:
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:
Enquire today, so we can help to find solutions that work for you.
If Stargardt disease affects your sight so much that you are eligible to register as vision impaired, and it affects daily life, you may be eligible for support such as Personal Independence Payment.
Having Stargardt disease is likely to mean you have a visual impairment, but this doesn't automatically mean you're unable to work. You might need some adjustments to help you manage at work. Employers are responsible for making reasonable adjustments to meet your needs.
The Access to Work scheme gives grants to fund equipment or services above and beyond the adjustments your employer should make. These can be used in a variety of ways, such as for getting to and from work if you can’t use public transport, paying for a support worker to accompany you, specialist equipment, and more.
Everyone must meet a minimum standard of vision to drive, as set by the DVLA. Stargardt disease affects visual acuity (the sharpness of your vision), so it may affect whether you can drive.
If your child is growing up with Stargardt disease, speak to their ophthalmologist for advice about how their vision may change over time and whether they are likely to meet the standard of eyesight needed for driving.
There’s lots of practical advice to help manage changes to your sight, but talking to someone can also help you deal with the emotional side of being diagnosed with Stargardt disease. Our Guide Line team can help you with your application process, part of this process can include help to find support groups and services local to you. Sharing your feelings and talking them over can boost your confidence about living with Stargardt disease or any other eye disease. Your family members might also benefit from understanding more about living with Stargardt disease and how to support you. RNIB offers a telephone counselling service, which is a group of professional telephone and online counsellors.
If your child is diagnosed with Stargardt disease, it's natural to feel worried for them at first, especially if you don't have experience of living with a visual impairment yourself. But there is a lot you can do to support and help them develop the skills they'll need to live a happy, independent, and fulfilled life.
Some of the ways to support your child include:
Stargardt’s Connected provides educational content about the disease, and the group invite people living with Stargardt disease and their family members to join their community register.
You can contact us to find out about services and support tailored to your individual needs.
Guide Dogs is committed to working alongside people with a range of vision impairments, who are registered as either sight-impaired or severely sight-impaired.
Our staff undergo comprehensive training in supporting individuals with vision impairment, to enable us to support you every step of the way through one of our many services, with and without dogs. We foster knowledge of living with vision impairment and create content in collaboration with our Vision Rehabilitation Specialists and Habilitation Specialists.
This content is periodically reviewed as we continue to embrace new knowledge and up-to-date information, in order to improve how we deliver our services and advice.
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.
Learn how Habilitation Specialists work with children and young people to help them build their skills and confidence.
Find recommendations for technology products and tools that can help you or your family living with sight loss.
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Find out how to get support for you, a family member or a friend who's experiencing vision problems.