Muhammad Syahiran Wazini Bin Izani Syazmalinda Bt Mohd Zamri FIRST DRAFT : ALBINISM

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What is albinism? Albinism is a disease that causes the affected loss of pigmentation of the skins, hair and eyes. According to Medilexicons medical dictionary (n.d), Albinism is A group of inherited (usually autosomal recessive) disorders with deficiency or absence of pigment in the skin, hair and eyes resulting from an abnormally melanin production. An individual with a complete absence of melanin is called an albino while one with only a small amount of melanin is described as albinoid. Albinism is also called achromia, achromasia or achromatosis. This disease can be inherited by human races, mammals, birds, fish, reptiles and amphibians. There are numerous type of albinism, which are identified by different gene defects. One of it is Ocular Albinism (OA). It is mentioned by Ballantyne (n.d) that Ocular Albinism only affect the eyes because of the X-linked chromosomal inheritance and it is highly occur to male. Meanwhile, Oculocutaneous Albinsm (OCA) will affect the eyes, hair and skin. Oculocutaneous Albinsm are divided into two, Oculocutaneous Albinsm1a and Oculocutaneous Albinsm1b. Oculocutaneous Albinsm1a involves the tyrosinase enzyme, which converts tyrosine (an amino acid) into melanin. Melanin is the chemical and enzyme that color our skin, eyes and hair. It is written by Kivi & Solan (2012), the more a person has melanin, the darker he or she will be. Oculocutaneous Albinsm1a are those who have no pigment and no tyrosinase in the body systems while Oculocutaneous Albinsm 1b are people who have some residual of tyrosine activity and pigment. Eventhough they have small pigmentation at birth, it may increase rapidly throughout their lives. (Spritz, 2013, p. 5961) The main factor of albinism is because of deficit one of several genes that produce melanin. The problem may affect the melanin production process. Albinism is inherited from the parents. When both parents carry an albinism gene, even though neither parent has the disorder, there one in four risk that their baby will suffer albinism (McDowell , 2008, p. 18-19). One of the cases that has been reported is about a non-albino parent granted a daughter in a pretty unique situation, which is all white. Her mother was very confused of what is happening to her daughter since the rest of the family members

are not an albino. Salmah Adam, the mother, claimed that maybe she get the disease from her late husband (myMetro Online (2013) Person with albinism is very odd looking and attracts a lot of attentions because of their special appearance. These peoples have very little or maybe no pigmentation in their eyes, skin and hair. These people are very pale with fair hair and very light color of the eyes (Nordqvist, 2012). In some people, the eyes are displayed either red or purple depending on the presence of the pigment. This happens because the iris actually has very little color. Sometimes, the eyes appear pink or red because the blood vessels inside of the eyes seen through the iris. (Nordqvist , 2012). Person with albinism is normally as healthy as the rest of the population. However, they do face vision and skin problems. The vision problems occur because of the lack of pigment in the eyes. This causes sensitivity that leads to discomfort in bright light. Meanwhile skin problems occur because of the melanin in the skin. This dark pigment helps human skin by protecting it from the suns ultraviolet radiation (UV) (Nordqvist , 2012). According to the National Organization for Albinism and Hypopigmentation (NOAH) (n.d), albinism does not affect a childs intelligent, but may affect their social development through surrounding and the environment. Theyre often bullied physically and mentally. They may find it difficult to make friends and be involved with others because of their special appearance. These people are often condemned and teased daily by the society. Many efforts were held to overcome the social stigma of albinism (Lovett, 2012). There are also fatal cases which happened especially in Tanzania, Africa. In 2009, Marianu Staford, a Tanzanian woman was sleeping in her hut when suddenly a group of malicious men broke in and viciously chopped her arms off. This woman was not attacked for tribalism, demoralization or sex. It is because she is an albino. The death toll for African Albino increases because hunted by witch doctor. They are hunt for their parts of body that are said to contain a magical power for this pitiless witch doctor in their rituals. In East Africa, albinos limbs are highly valued. The limbs are sold thousands of dollars on the black market to the witch doctor as portion to bring prosperity. Since 2007 in Tanzania, 64 peoples with albinism in their body systems had been murdered for the limbs, while 14 others have been mutilated. The wicked case was, a 13 years old girls right arm was severely chopped when she lay sleeping next to her mother (Lovett, 2012). For every problem, there will always be solutions, the same case goes for albinism. Since a person with the albino disease is lacking in melanin, the skin are more sensitive to the suns UV rays

because extended exposure to UV. They will highly increase the risk of suffering skin cancer. Any exposed skin must be protected from the sun using sunscreens with high sun protection factor (SPF). Meanwhile, the eyes should be protected by sunglasses with high UV protection to avoid eye cataract (McDowell, 2008, p. 18-19). Vision problems associated with albinism can be treated with surgery. One common visual problem that can be corrected with surgery is strabismus. Strabismus is a muscle imbalance of the eyes resulting in crossed eyes or also called lazy eyes (McDowell , 2008, p. 18-19). Besides, vision aids, such as glasses, bifocals, prescription reading glasses, magnifiers or monocular and colored contact lenses can help individuals with albinism (Spritz, 2013, p. 5961). According to the National Organization for Albinism and Hypopigmentation (NOAH) (n.d), approximately one in 17,000 people in the United States suffer this genetic mutation. Many organizations have been assembled to support people with albinism. This participation in support groups and organizations can support children and adults with albinism. These groups can help the individual to feel less isolated and live like a normal human. Lastly, who said living with this disease can ruin your life? Many people with albinism have proven that their life is valuable to be lives in. One of them is Diandra Forrest. She is probably the most popular Afro-American albino top model. She hopes could see other albinos come out from their shell especially in the African states. She said that she has visions and that one day society can get rid the stigma towards albinos (Forbes, 2012) (1124 words)

REFERENCES Ballantyne. C. (n.d). Scientific American : Killing albinos tanzania. Retrieved December 10, 2013, from http://www.scientificamerican.com/article.cfm?id=killing-albinos-tanzania-albinsm Forbes. K., (2012). BBC News : Albino models setting the trend for Africa. Retrieved February 3, from http://www.bbc.co.uk/news/world-africa-20096144

Kivi, R. & Solan, M. 2012. Healthline : Albinism. Retrieved December 13, 2013, from http://www.healthline.com/health/albinism Kampung Albino Di Negeri Sembilan. (2013). Retrieved February 3, 2014, from http://mynewshub.my/2013/12/28/kampung-albino-di-negeri-sembilan/ Lovett. E. (2012). abc News : Death toll for African albinos grows. Retrieved January 21, 2014 from abcnews.go.com/blogs/headlines/2012/03/death-toll-grows-for-african-albinos-

hunted-for-witch-doctors Mcdowell, J., (2008). Diseases and disorders : volume 1. New York : Marshall Cavendish Corporation. Nordqvist, C., (2012). Medical news today : what is albinism?. Retrieved December 10,2013 from http://www.medicalnewstoday.com/articles/245861.php Spritz, R. A., (2013), Brenner's Encyclopedia of Genetics (2nd ed.). p. 5961. University of Colorado School of Medicine: Aurora, The National Organization for Albinism and Hypopigmentation (NOAH), (n.d) Retrieved December 10,2013 from http://www.albinism.org/