Living with Albinism

Living with albinism can take some getting used to especially for children with the condition. Self-care practices such as using sunscreen at all times, avoiding high-risk exposure to the sun, and protecting the eyes should be taught at an early age. Children and adults with albinism may also benefit from the use of low vision aids such as a magnifying glass or a monocular that attaches to the glasses.

Vision impairment is one of the biggest challenges of albinism and many people with the condition develop their own set of coping skills to make adjustments. For example, tilting the head to one side may reduce the effects of nystagmus.

Schooling can be a difficult time for children with albinism. In addition to the stigma attached to their looks, they may also have problems studying due to visual problems.

Parents of children with albinism should educate the school authorities and administration about albinism and how it affects the child. Changes such as keeping the child seated at the front of the class and the use of large-print textbooks can help encourage the child to participate in class.

With regard teasing and social isolation, adults and children with albinism can find a support group of peers online or in the community. Organizations such as the National Organization for Albinism and Hyperpigmentation (NOAH) can be contacted for more information. If the situation is too difficult to handle, visiting a counselor or therapist can be beneficial.

The bottom line is that albinism cannot be cured or prevented. However, if parents suspect that they may be carriers of the gene that causes albinism, it is recommended that they visit a genetic counselor before getting pregnant. If already pregnant, prenatal tests can be carried out to determine if the fetus has inherited the genetic mutations responsible for albinism. A genetic counselor will inform and educate parents about the challenges of having a child with albinism so that both partners can make an informed decision.