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Coping and support
By Mayo Clinic staff
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. 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.
- Hornyak TJ. Albinism and other genetic disorders of pigmentation. In: Wolff K, et al. Fitzpatrick's Dermatology in General Medicine. 7th ed. New York, N.Y.: McGraw-Hill Professional; 2007. http://www.accessmedicine.com/content.aspx?aID=2959771. Accessed Feb. 23, 2009.
- Wolff K, et al. Pigmentary disorders. In: Wolff K, et al. Fitzpatrick's Color Atlas & Synopsis of Clinical Dermatology. 5th ed. New York, N.Y.: McGraw-Hill Professional; 2005. http://www.accessmedicine.com/content.aspx?aID=751347. Accessed Feb. 23, 2009.
- Oculocutaneous albinism. Genetics Home Reference. http://ghr.nlm.nih.gov/condition=oculocutaneousalbinism. Accessed Feb. 23, 2009.
- Albinism. The Merck Manuals: The Merck Manual for Healthcare Professionals. http://www.merck.com/mmpe/print/sec10/ch123/ch123b.html. Accessed Feb. 25, 2009.
- King RA, et al. Oculocutaneous albinism type 1. Gene Reviews. http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=oca1. Accessed Feb. 25, 2009.
- King RA, et al. Oculocutaneous albinism type 2. Gene Reviews. http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=oca2. Accessed Feb. 25, 2009.
- TYRP1. Genetics Home Reference. http://ghr.nlm.nih.gov/gene=tyrp1. Accessed Feb. 25, 2009.
- Brilliant MH. Oculocutaneous albinism type 4. Gene Reviews. http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=oca4. Accessed Feb. 25, 2009.
- What is albinism? National Organization for Albinism and Hypopigmentation (NOAH). http://www.albinism.org/publications/what_is_albinism.html. Accessed Feb. 23, 2009.
- LYST. Genetics Home Reference. http://ghr.nlm.nih.gov/gene=lyst. Accessed Feb. 25, 2009.
- Albinism. American Association for Pediatric Ophthalmology and Strabismus. http://www.aapos.org/displaycommon.cfm?an=1&subarticlenbr=62. Accessed March 5, 2009.
