Long Term Effects
Albinism, a group of inherited disorders, results in little or no production of the pigment melanin. The type and amount of melanin your body produces determines the color of your skin, hair and eyes. Most people with albinism are sensitive to sun exposure and are at increased risk of developing skin cancer.
Melanin also plays a role in the development of certain optical nerves. All forms of albinism cause problems with the development and function of the eyes.
Although there's no cure for albinism, people with the disorder can take steps to improve vision and avoid too much sun exposure. Albinism doesn't limit intellectual development, though people with albinism often feel socially isolated and may experience discrimination.
Melanin also plays a role in the development of certain optical nerves. All forms of albinism cause problems with the development and function of the eyes.
Although there's no cure for albinism, people with the disorder can take steps to improve vision and avoid too much sun exposure. Albinism doesn't limit intellectual development, though people with albinism often feel socially isolated and may experience discrimination.
Coping and Support
Coping with vision impairment
Many people with albinism develop coping skills to adjust to vision impairments. Tilting the head to one side can minimize the effect of nystagmus and improve vision. Holding a book very close can make it easier to read without causing any harm to the eyes.
Coping with educational challenges
If your child has albinism, begin early to work with teachers, special education instructors and school administrators. If necessary, start with educating the school professionals about what albinism is and how it affects your child. Also inquire about services the school can provide to assess your child's needs.
Adjustments to the classroom environment that may help your child include:
Coping with teasing and social isolation
Help your child develop skills to deal with other people's reactions to albinism:
Many people with albinism develop coping skills to adjust to vision impairments. Tilting the head to one side can minimize the effect of nystagmus and improve vision. Holding a book very close can make it easier to read without causing any harm to the eyes.
Coping with educational challenges
If your child has albinism, begin early to work with teachers, special education instructors and school administrators. If necessary, start with educating the school professionals about what albinism is and how it affects your child. Also inquire about services the school can provide to assess your child's needs.
Adjustments to the classroom environment that may help your child include:
- A seat near the front of the classroom
- Handouts of the content written on boards or overhead screens
- High-contrast printed documents, such as black type on white paper rather than colored print or paper
- Large-print textbooks
Coping with teasing and social isolation
Help your child develop skills to deal with other people's reactions to albinism:
- Encourage your child to talk to you about his or her experiences or feelings.
- Practice responses to teasing or embarrassing questions.
- Find a peer support group or online community through agencies such as the National Organization for Albinism and Hypopigmentation (NOAH). You can reach NOAH at 800-473-2310.
- Seek the services of a psychotherapist, who can help you and your child develop healthy communication and coping skills.
Lifestyle and home remedies
You can help your child learn self-care practices that should continue into adulthood:
- Use low vision aids, such as a hand-held magnifying glass, a monocular or a magnifier that attaches to glasses.
- Apply sunscreens with a sun protection factor (SPF) of at least 30 that protects against both UVA and UVB light.
- Avoid high-risk sun exposure, such as being outside in the middle of the day, at high altitudes and on sunny days with thin cloud cover.
- Wear protective clothing, including long-sleeved shirts, long pants and broad-rimmed hats.
- Protect your eyes by wearing dark, UV-blocking sunglasses.