What is albinism?
Albinism (say: AL-buh-niz-um) is a name used for genetic conditions that cause a person to have no pigment or less pigment than usual. Pigment is what gives our eyes, skin and hair their colour.
There are two types of albinism:
When the skin, hair, and eyes are involved, it is called oculocutaneous (say: ock-you-lo-kyoo-TAY-nee-us) albinism (OCA).
When the eyes are involved, but skin and hair colouring are normal, it is called ocular albinism (OA).
Both types of albinism will cause your child to have poor eyesight. Each child’s vision will be affected in a different way. Albinism does not usually cause other medical problems or cause your child to have poor health.
Who ocular albinism affects
OA is an X-linked disorder, which means it affects only boys. Women can be carriers of ocular albinism. People with ocular albinism have eyes that may look and work differently.
For more information, please see Albinism and Genetics.
Your child can see, but will not have perfect vision
It is important to understand that your child can see. Most children with albinism are not totally blind although many are legally blind.
Albinism affects the retina and the optic nerves. The retina is the inside lining of the eye. It acts like a screen onto which pictures are projected. In eyes affected by albinism, the retina cannot produce a sharp image and the nerves do not transmit a clear image to the brain.
Imagine a picture projected onto a smooth screen. It appears as a sharp visual picture. Now, imagine the same picture is projected onto a woolly blanket. The picture will appear to be fuzzy and out of focus. Imagine that a normal retina is like the smooth screen and a retina affected by albinism is like the woolly blanket.
The sharpness or clearness of what people see is called visual acuity (VA). People with albinism have low visual acuity. This means that what they see can be unclear or blurry.
For more information, please see our page on Eye Anatomy and Function.
People with albinism often have pale blue eyes because they have very little pigment in the iris. Most children with albinism do not have red or pink eyes.
When an eye doctor shines a bright light into an eye unaffected by albinism, the light bounces back out through the pupil. This is the effect that causes "red eye" in photographs. For children with albinism the light comes through the iris as well as the pupil. This is called iris transillumination. Most likely only the eye doctor will be able to tell if your child has iris transillumination.
Nystagmus .(say: na-STAG-mass) causes the eyes to ‘shake’ or move rapidly. The eyes may move side to side, up and down or in a circle. Most children with albinism have some form of nystagmus. The shaking decreases with age and will usually level off by the time your child is 7.
People sometimes think that nystagmus causes children to see a “moving world”. This is a myth.
In the eyes of a person without albinism, the optic nerve leaves each eye and goes to the centre of the brain. This is where the pathways from each eye meet in a structure called the optic chiasm. At the chiasm, about half of the nerve fibres travel to the opposite of the brain from where they started. The other half travel to the same side of the brain as they started. The crossing of the nerves helps us see properly and transmit images from the eye to the brain.
For a person affected with albinism, the nerves split unevenly. For example instead of half going to each side of the brain, 30% may go to one side and 70% to the other. This is called chiasmal misrouting.
Most people with albinism have chiasmal misrouting. It is uncommon in people who do not have a form of albinism. To find out if your child has chiasmal misrouting the eye doctor will do a test called a “visual evoked potential” (VEP).
Most people with albinism are sensitive to bright lights. This can be uncomfortable but is usually not painful. Your child may want to wear sunglasses or a peaked cap both inside and outside to protect the eyes from bright lights.
Vision care for children with albinism
Your child with albinism should visit the eye doctor at least once per year to have his eyes tested.
Ask your eye doctor about your child’s visual acuity (VA) before he starts kindergarten. If your child has poor visual acuity (20/70 or worse), he may need vision aids for school.
Your child will probably sit very close to the television and will hold books very close to his face. This is normal for children with albinism and will not hurt his eyes.
Devices and tips to help your child’s vision
Your child may need assistive devices to see as well as possible. In Ontario, the Assistive Devices Program (ADP) may help you pay for devices to help your child’s vision. Ask your eye doctor for a referral for a low-vision assessment. This type of service can show you devices to help your child see as well as possible.
These devices and tips may be especially helpful in school:
- Eye glasses may help some children but will not give them 20/20 vision.
- Corning lenses are specially tinted eye glass lenses for light-sensitive children.
- A monocular is a mini-telescope that can be useful for seeing distances, especially for young students. Most monoculars come on a lanyard for your child to wear around his neck.
- Make sure your child has an itinerant teacher. This is a special teacher who comes to your child’s class to make sure he has what he needs to do well in school, such as large print books and an arrangement to sit at the front of the classroom.
- Closed circuit television (CCTV) is a machine that enlarges the print in books and photographs. Your child should have one at home and one at school.
- White canes are usually not used by people with albinism for getting around. They can, however, be a useful safety device to alert others, especially drivers, that your child is visually impaired.
High tech vision aids can be useful for older students once they need to do a lot of reading.
- Software programs (for example, JAWS and ZOOMTEXT) can help increase the size of icons, cursor, and fonts when using the computer.
- Computerized dictation programs.
- Video cameras that bring images closer and can attach to a laptop computer.
Some people with albinism can drive, but most cannot. Ask your child’s eye doctor if he has the minimum visual acuity needed to drive. The minimum VA to get a driver’s license in Ontario is at least 20/50 in his best eye (measured with glasses).
- Ocular albinism is a genetic condition that affects the pigment in the eyes.
- OA affects only boys.
- Your child can see but is visually impaired.
- There are devices and tips that can help your child see better and to succeed in school.