In December 2014, the United Nations declared 13 June of every year as International Albinism Awareness Day. Albinism is a rare, non-contagious genetic disorder with which a person is born. This disorder is due to mutations in the genes responsible for the production of melanin in the body; the substance that gives color to the skin, hair, and eyes. It is estimated that 1 in every 20,000 people in Europe and North America have albinism, while the percentage increases in sub-Saharan Africa. In Tanzania, 1 every 1,400 people is affected, while in Zimbabwe, 1 in every 1,000 people have albinism.
Melanin is a group of pigments made by the human body that absorb ultraviolet rays and protect against sunburn. Mutations affect the work of the tyrosinase enzyme, which breaks down the amino acid "tyrosine" and melanin is made from it. According to the type of mutation, melanin production may stop or decrease. Among the types of melanin is the eumelanin, which is a brown or black pigment, pheomelanin which is a yellow pigment, and neuromelanin, which is responsible for controlling the color of neurons. People with albinism usually have a low eumelanin level, but their hair has normal pheomelanin levels.
There are several types of albinism:
- Oculocutaneous Albinism: The most common type, it encompasses seven subtypes, where affected persons have pale skin, hair, and eyes.
- Optic Albinism: A rare type in which the color of the eyes is blue, pinkish, or reddish, reflecting the color of the blood vessels.
- Hermansky-Pudlak Syndrome: This includes oculocutaneous albinism, in addition to blood disorders and kidney, lungs, or intestinal diseases.
- Chediak-Higashi Syndrome: This includes oculocutaneous albinism, in addition to immunological and neurological problems.
Symptoms of albinism include the pale color of the skin, hair, and eyes, light patches on the skin due to the lack of pigments, in addition to rapid movement of the eyes, strabismus, vision problems, sensitivity to the light, lazy eye, nearsightedness or farsightedness, astigmatism, and optic nerve paresthesia and hypoplasia.
There is no cure for albinism, but symptoms can be alleviated by following some tips, such as lessening the exposure to the Sun as much as possible, wearing sunglasses, sun protective clothes, hats, sunscreens, appropriate eyeglasses, in addition to having regular check-ups because albinos are more susceptible to skin cancer.
Albinos are often able to live a normal life. However, in societies where awareness is low and ignorance is widespread, they may suffer in many ways related to vision problems, including difficulty in obtaining a driver's license and reading problems that may result in academic delay. In some African countries, there are some myths related to albinos, such as that their bodies contain minerals that bring luck and wealth, which threatens their lives and they may be kidnapped to take their organs or murdered.
Albinos may face discrimination from their families, communities, or in their work environment. The forms of discrimination differ from one region to another. In Western countries, they are insulted and bullied, while in China and some Asian countries, some children are abandoned and rejected by their families; even women who give birth to albino children are rejected by their husbands and families.
For this, the United Nations has declared an Albinism Awareness Day to raise awareness among people about this genetic disorder and to advocate a safe life for albinos, free from any form of discrimination.
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References
clevelandclinic.org
eyes-on-europe.eu
mcgill.ca
medicalnewstoday.com
nationaltoday.com
un.org