Albinism and Visual Impairment in Children
What Is Albinism?
Albinism includes a group of inherited disorders characterized by a variable lack of pigment in the skin, hair, and/or eyes.
The amount of pigment varies greatly depending on the type of albinism. The two primary types of albinism are oculocutaneous and ocular. Oculocutaneous albinism affects the pigment in skin, hair, and eyes; ocular albinism, far rarer and more frequently found in males, predominantly affects the pigment in the eyes.
Many with albinism have low vision caused from low pigment in the iris (visible, colored portion of the eye), atypical development of the center of the retina (thin, light-sensitive nerve issue lining the back of the eye) called foveal hypoplasia, and abnormal nerve connections between the eye and the brain called optic nerve misrouting. Furthermore, strabismus (misaligned eyes), nystagmus (involuntary darting of the eyes), and refractive errors (nearsightedness, farsightedness, and astigmatism) are common in individuals with albinism.
How Is It Diagnosed?
Albinism is typically detected by the appearance of light hair, skin, and eyes.
If Albinism is thought likely, an ophthalmologist should examine the child’s retinas and pattern of nerve connections between the eyes and the brain. If found, the child will be given a diagnosis of albinism.
Additionally, genetic testing can diagnose albinism.
Are There Treatments for Poor Eyesight Attributed to Albinism?
Eyeglasses may be prescribed to improve any refractive error, and surgery is an option for correcting misaligned eyes (strabismus) and for minimizing involuntary eye movements (nystagmus).
How Would You Describe the Eyesight of One with Albinism and How Will My Child Function with It?
There is much variation in quality of vision for individuals with albinism. According to the American Association for Pediatric Ophthalmology and Strabismus, those with the least pigment will typically have the poorest “functional vision” (vision used across a variety of nonclinical settings). This is likely the case because they have more significant foveal hypoplasia and optic nerve misrouting, and additionally, because the less pigment in the iris, the more (unnecessary) light floods into the eyes.
Because foveal hypoplasia is atypical development of the fovea (center of the retina), the role the fovea plays in providing sharp, detailed vision is impaired. Your child may have difficulty recognizing faces and facial expressions, accessing information from a distance, identifying small images or letters on paper, and recognizing details.
If this is the case, your child may benefit from increased contrast of the environment and increased contrast of print by using a CCTV or screen-magnification software. Your child may also benefit from assistive technology to more easily use the computer and to utilize techniques and accommodations to perform activities with limited vision. He or she may even be a good candidate for braille.
Because extra light enters the eyes of children with albinism, they are sensitive to bright light and glare. In addition to having difficulty with outdoor reading (street and store signs, for example) or indoor reading when bright window light or glare is present, your child will likely have difficulty traveling outdoors in the bright sunlight. Their environment may appear all white or lack contrast and using the eyes in such an environment will cause strain and discomfort. Tinted eyeglasses and use of a brimmed hat will provide some relief to the eyes. Additionally, the child may need an orientation and mobility specialist to provide instruction on using a cane (to refrain from bumping into obstacles) and public transportation (particularly when eyesight is poor enough to limit future driving).
If nystagmus, involuntary and repetitively darting of the eyes, is present, your child may or may not have additional vision issues. If a functional vision issue is present, it will likely be reduced visual acuity (blurrier vision, sometimes correctable with prescription glasses/bifocals); issues with balance (eased with use of a support cane); and most commonly, difficulty keeping place when reading. Use of a reading guide will help your child maintain his or her place.
If strabismus, misaligned eyes caused from muscle imbalances, is present, your child will have initial double vision and/or issues with depth perception. Use of a cane becomes important to detecting drop-offs and uneven ground when walking.
Your child’s teacher of students with visual impairments should perform a functional vision assessment to determine how your child sees in functional environments and a learning media assessment to determine which senses your child primarily uses to get information from the environment. These assessments, along with an orientation and mobility assessment conducted by a mobility specialist, will give the educational team information needed to make specific recommendations for your child to best access learning material and his or her environment.
Resources for Families of Children with Albinism
- Lighthouse Guild for the Blind offers a free National Tele-Support Network for Parents of Children with Visual Impairment to connect you with other parents of children with albinism, so you can share resources, experiences, strength, and hope. The tele-support groups meet by phone every week and are facilitated by a psychologist or social worker with input from professionals knowledgeable about children’s eye conditions. For more information or to enroll in a tele-support group, call 800-562-6265 or write to email@example.com.
- The National Organization for Albinism and Hypopigmentation
- Albinism by the American Association for Pediatric Ophthalmology and Strabismus
- VisionAware’s Albinism and Low Vision