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Albinism

Alternative Names:

Oculocutaneous albinism; Ocular albinism

Treatment:

Treatment aims to ease symptoms and depends on the extent of the disorder.

The skin and eyes must be protected from the sun. Sunglasses (UV protected) may relieve photophobia. Sunburn risk can be reduced by avoiding the sun, by using sunscreens and covering completely with clothing when exposed to sun. Sunscreens should have a high SPF (sun protection factor).

Support Groups:

National Organization for Albinism and Hypopigmentation

www.albinism.org

International Albinism Center

albinism.med.umn.edu

Hermansky-Pudlak Syndrome Network

www.hpsnetwork.org

Expectations (prognosis):

Mostly, albinism does not change one's expected lifespan. For those with Hermansky-Pudlak syndrome, however, life expectancy may be shortened due to lung disease or bleeding problems.

Activities for those with albinism may be limited by intolerance to the sun.

Complications:

Calling your health care provider:

Call your health care provider if you have albinism or symptoms such as photophobia that cause discomfort. Also call if there are any skin changes that might be an early sign of skin cancer.

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