Oculocutaneous albinism (OCA) is a condition that affects your pigmentation.
Pigmentation refers to the colour of your skin, hair and eyes. The pigment that is responsible for this is called melanin. Melanin protects these structures from UV rays, which means that it protects you from sun damage.
If you have OCA, you have a reduced amount of melanin or you may not have any melanin at all. This will cause glare and reduced contrast. You can reduced vision and find that you particularly struggle with your vision when you are outdoors. This is very common for children with OCA.
You may also have an associated condition called nystagmus, which is when your eyes move rapidly by themselves. This can fatigue your eyesight and you may find that your vision gets worse when you are tired or ill.
It is important to make sure that either your environment is adjusted for light sensitivity and glare, or that you have the appropriate adaptations to help with this. This includes things like tinted glasses (i.e. sunglasses or glasses with lenses that become darker when exposed to light).
Children with OCA can receive a clinically necessary tinted lens to help with their light sensitivity. Some children prefer sunglasses with a specific tint. These tints often come in dark brown or dark grey. Older children may benefit from fitover glasses, such as Coccoons. These are glasses that are designed to go over their spectacle lenses and cover a larger area.
Other children prefer for their spectacle lenses to become darker as the light levels increase. These are transition lenses and this can be useful if the child has a spectacle prescription and does not want to switch between two pairs of “indoor” and “outdoor” spectacles.
It is also important to consider glare. Even with spectacle wear, children can still suffer from light sensitivity from directly above them. In these instances, we strongly recommend a cap and UV protective clothing.
It is difficult to completely eliminate light sensitivity. Children can find it difficult to adapt between areas of low light to dim lighting and vice versa. This is called dark and light adaptation. It is important for teachers to be aware that it can take the child some extra time for their vision to adjust both when coming indoors or taking them outdoors. Habilitation officers can also offer good advice during mobility training for ways to combat
this.
There are many organisations and charities with information, advice and social events for children with OCA: