Stargardt’s Disease is an eye condition that affects your central vision. This happens because it affects the macula, which is the part of your eye that helps you see details.
The eye processes images when light travels from the front of the eye to the back surface, which is called the retina. The retina helps turn light into signals that your brain can understand, and that's how you see the world around you. The macula is located in the centre of your retina and is therefore responsible for your central vision. The macula is also responsible for small details and colour vision.
If your macula is affected, you may struggle to pick out small details on people’s faces and therefore struggle with interpreting facial expressions. You may find it easier to recognise a person if they have a distinguishable feature, such as a brightly coloured pair of spectacles. You may also struggle with small text or mathematical diagrams in workbooks. This is very common for Stargardt’s and there are a number of adaptations you can make to help with this.
Stargardt’s can make it harder to see things right in front of you clearly, but it doesn't mean you can't see anything at all. Sometimes adjusting your head and looking from the side of your vision can help. We call this “eccentric fixation”. You may have already found that certain head positions provide more clarity and contrast. Although this is very normal and should not be discouraged, it can be difficult to maintain for periods of time. This is why it is also important to make sure that you have appropriate adaptations in place and let your teachers or parents know if you’re struggling with a particular task. There are a variety of solutions that you may not be aware of. Our section on low vision and
confidence building provides more detail on these.
Another common complaint from people with Stargardt’s is light sensitivity. This is when your eyes feel more uncomfortable compared to others when there are bright lights. This is common for people with Stargart’s. Tinted spectacles and adjusting your lighting levels can help.
You can also struggle with distinguishing colours. Similar hues may appear exactly the same, and generally appear desaturated. This is why contrast and appropriate lighting is important. This should be taken into account for both your school work and hobbies.
Although increased lighting helps vision, it can also cause glare if not directed appropriately. Angle poise lamps can be useful as these can help your child to direct the light onto the object. Warm white LED bulbs offer a warmer light typically between 2700K-3200K. For those preferring high visibility, daylight LED can be useful. However, these range from 5000K-6500K, so it is important to again be mindful of glare.
Many children with visual impairment struggle to see details from facial expressions, especially when there is central vision loss. This means that they can struggle to see if another child is smiling or frowning at them when they are at a distance. Some young people share that they are not always able to visually pick up a response to a joke they have told or a statement that they have made. At a young age, it can be useful for parents or teachers to describe these facial expressions, especially when the child shows confusion.
Many children with Stargardt’s can mask some of the issues they have because their eye condition may not appear obvious to the outside world. Many children can distinguish outlines and are generally very mobile. So it is difficult to pick up areas that they struggle with. For example, a child may be able to spot read a task well, and therefore prove that they can “see” the detail, but they may not be able to sustain this over a period of time. This is generally due to an increase in scanning and therefore an increase in eye fatigue. Often times, many children prefer using technology, which should be encouraged in conjunction with appropriate breaks rather than replacing visual fatigue breaks.
There are many organisations and charities with advice and social events for children with Stargardt’s Disease: