Coping with vision impairment
Many people with albinism develop coping skills to adjust to vision impairments. Tilting the head to one side may 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
Despite visual handicaps and abnormal optic nerve pathways, children with albinism are developmentally normal. If your child has albinism, begin early to work with teachers and school administrators to facilitate measures to help your child adapt. These may include sitting in the front of the class, using large-print books or a tablet computer for learning, avoiding bright light in the learning setting, or allowing more time for taking tests.
If necessary, start with educating the school professionals about what albinism is and how it affects your child. Also ask 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
- A tablet computer that can be synced to an interactive whiteboard (SMART board) at the front of the room, allowing the child to sit farther back in 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
- Other options, such as showing the child how to enlarge font size on a computer screen
Coping with teasing and social isolation
Help your child develop skills to deal with other people's reactions to albinism:
April 19, 2014
- Encourage your child to talk to you about experiences and 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 mental health professional, who can help you and your child develop healthy communication and coping skills.
- Wolff K, et al. Fitzpatrick's Dermatology in General Medicine. 8th ed. New York, N.Y.: The McGraw-Hill Companies; 2012. www.accessmedicine.com/resourceTOC.aspx?resourceID=740. Accessed Nov. 21, 2013.
- Albinism. The Merck Manuals: The Merck Manual for Health Care Professionals. http://www.merckmanuals.com/professional/dermatologic_disorders/pigmentation_disorders/albinism.html?qt=&sc=&alt=. Accessed Nov. 21, 2013.
- Levin AV, et al. Albinism for the busy clinician. Journal of AAPOS. 2011;1:59.
- What is albinism? National Organization for Albinism and Hypopigmentation (NOAH). http://www.albinism.org/publications/2010/What_is_Albinism.pdf. Accessed Nov. 21, 2013.
- Summers CG. Albinism: Classification, clinical characteristics and recent findings. Optometry and Vision Science. 2009;86:659.
- Gronskov K, et al. Oculocutaneous albinism. Orphanet Journal of Rare Diseases. 2007;2:43.
- Brodsky MC (expert opinion). Mayo Clinic, Rochester, Minn. Dec. 15, 2013.
- Hand JL (expert opinion). Mayo Clinic, Rochester, Minn. Dec. 13, 2013.
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