Living with Stargardt disease

Stargardt disease is an inherited condition that affects the retina, causing progressive loss of central vision.

People living with Stargardt disease will benefit from support to make the most of their remaining sight.

Most people retain their peripheral (side) vision and can get around independently. Even so, it's natural to worry if you or someone you love is diagnosed with the condition.

Managing life with Stargardt disease

When you have Stargardt disease, you experience progressive loss of central vision in both eyes.

This usually begins in childhood or the teenage years, with the rate of vision loss varying between different people.

It doesn't typically affect peripheral (side) vision, so it won't prevent you from getting around independently. But we rely on central vision for seeing fine details (for example, when reading) and looking straight ahead (for example, when looking at someone's face). That means it can have a significant impact on day-to-day life. 

There is currently no treatment for Stargardt disease, but research is ongoing into potential future treatments and therapies, for example, using stem cells. 

Your ophthalmologist (eye doctor) will give you personalised advice for living with the condition such as: 

• Wearing UV protective eyewear when out in bright light
• Not to take vitamin A supplements 
• Avoiding smoking and smoky environments
• Regular eye tests are also important for anyone living with an eye condition

Can you work 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.   

There may be practical things that will help, such as:

• Screen reader software, voice recognition programmes, apps and accessibility features on digital devices
• Brighter lighting
• Visuals aids such as magnifying lenses

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.

Having a sight impairment can make it harder to find work, and there will be some types of jobs that may not be open to you (for example, in the military). If you're the parent of a child with Stargardt disease, you can support your child in finding out about career options open to them and support available. Knowing their rights and how to talk to employers about their needs can help boost their confidence.

Get support for living with Stargardt disease

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

There are many practical ways to cope with changes to your vision. For example, use plenty of bright even lighting in your home, aids such as magnifying lenses, and technology such as E-readers and tablets.

Contact us to find out about services and support tailored to your individual needs. 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.

Depending on the progression of the condition, you may consider becoming registered as having sight loss. This can make you eligible for further support and benefits to alleviate some of the worry and expense of worsening vision. Your specialist can complete a certificate if you meet the requirements.

Support for children with Stargardt disease

When your child has Stargardt disease, it's natural at first to feel worried for them, especially if you don't have experience of living with a visual impairment yourself. But there is a lot you can do to support them 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.
• Helping them cope with the emotions they feel about changes to their sight and how they'll manage. They might benefit from counselling with someone professionally trained. We can offer support at every stage of their development, and the Macular Society provides free telephone counselling.
• 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.

Frequently asked questions

The Royal College of Ophthalmologists champions excellence in the practice of ophthalmology and is the only professional membership body for medically qualified ophthalmologists. The RCOphth is unable to offer direct advice to patients. If you’re concerned about the health of your eyes, you should seek medical advice from your GP, optometrist or ophthalmologist.

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