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

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.

Working with Stargardt disease

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.

Driving with Stargardt disease

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.

Support for people living with Stargardt disease

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 can help you 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:

• Talking to your child’s school about their condition, so they understand how it affects them and the adaptations they might need. There are Qualified Teachers of children with a Vision Impairment (QTVIs) who provide expert support and advice. Find out more about getting education support for your child.
• At the right time, helping them understand the results of any genetic testing they may have received. As they reach adulthood, make them aware of the possibility of genetic counselling.

Support organisations 

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.