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Albinism 101

In the early 17th century, historian Balthazar Telez coined the term “Albino” to describe an astonishing phenomenon when he saw a white Negro amongst a group of tribe members along the coastline of West Africa. At first, he and his team of explorers thought they were seeing two different races of people. However, upon closer inspection, they realized that this, seemingly white individual was not Caucasian, nor does he portrayed traits of any other race other than of black African descendants.

The term, Albinism can be considered a genetic disorder that causes the skin, hair, or eyes to have little to no pigment or colour. There are cases where scientists amongst other researchers consider it as a congenital disorder, meaning a birth defect. Less discriminatorily, it is now considered as a genetic condition or syndrome. Nevertheless, the term is used to further categorised individuals with this condition into another race.

[Indian albino family begging]
Family with Albinism in India

Albinism can be found in every type of species, even plants, fishes, amphibians, reptiles, and birds. Nevertheless, it doesn’t only occur in African descendants as many led to believe, but in all racial and ethnic groups throughout the world. According to National Organization for Albinism and Hypopigmentation, about 1 in 18,000 to 20,000 people in the United States has a type of albinism. The Albinism Fellowship reported that 1 in 17,000 people in the United Kingdom is born with some form of albinism. In an Observer article published by Mr McFarlane, Tanzania is believed to be the largest population of albinos in Africa. About 12,000 albinos are registered with the Tanzania Albino Society as of 2017, even though there is an estimate of over 15,000 albinos present in Tanzania. The Kuna Indians of San Blas islands off the coast of Panama have one of the world’s highest populations of albinos based on The Guardian. The Caribbean, one of the largest population of African descent, has a fair number of albinos in its midst. In Jamaica, like many African countries, people with albinism were historically degraded and regarded as cursed. Popular dancehall artist Yellowman and Al Beeno helped to reduce this stereotype in the late 90s. During my years of High School in Jamaica, there were three albinos present in a single grade, which include myself. It was not hell for me due to my open personality, but it was reported by the other two, not just to the school, but being interviewed by TelevisionJamaica that school life for them was terrifying.

Albinism is not a curse. It is hereditary like the sickle-cell disease. It is only detectable at birth. As reported by Rose Kivi and Matthew Solan, children are at risk of being born with albinism only if they have parents with albinism, or parents who carry the gene for albinism. There is no scientific prevention for albinism, only abstaining from mating with an albinism carrier. Nevertheless, the chance of giving birth to an albino is based on the likeliness of you and your partners are carriers or not, as Dr Sahil Kejriwal explained in response to a question asked about the odds of having an albino child. According to Tim Newman,  most types of albinism are inherited in an autosomal recessive inheritance pattern, meaning an individual must receive faulty copies of a gene from both the mother and father to develop albinism. For instance, an offspring has a 1 in 4 chances to develop albinism if both parents are carriers of the gene and 1 in 2 chances to become carriers of the gene.

There are four main types of albinism. Each type is categorise based on the gene that was affected. The four type of albinism are:

  • Oculocutaneous Albinism (OCA): this affects the skin, hair, and eyes. There are several subtypes of OCA:
    • OCA1: This is is due to a defect in the tyrosinase enzyme. Individuals with OCA1 have little to no pigment, milky or pale skin, white hair, and blue eyes.
    • OCA2: This is less severe than OCA1. It’s due to a defect in the OCA2 gene (formerly known as the P gene), which results in a reduction in melanin production. Individuals with OCA2 usually have yellow, blond or brown hair and light skin. OCA2 occurs mostly in Sub-Saharan Africans, African Americans, and Native Americans.
    • OCA3: This is caused by a defect in the TYRP1 gene. Individuals with OCA3 usually have reddish brown skin, reddish hair, and hazel or brown eyes. Dark skinned individuals or black South Africans are usually affected by this gene.
    • OCA4: This is caused by a defect in the SLC45A2 gene. This defect causes a reduction in melanin production. OCA4 is common amongst people of East Asian descent.
  • X-linked ocular Albinism (XOA): is the result of a gene mutation on the X chromosome. It occurs almost exclusively in males. This type of albinism only affect the eyes. Individuals with XOA have no pigment in the retina. However, they have normal hair, skin and eye colouring.
  • Hermansky-Pudlak Syndrome (HPS): is a rare type of albinism that is similar, yet more severe than Oculocutaneous Albinism, which includes bowel, heart, kidney and lung diseases or bleeding disorders.
  • Chediak-Higashi Syndrome (CHS): is another rare type of albinism that is caused by a mutation in the CHS1/LYST genes. It’s similar to the Oculocutaneous Albinism but may not affect all areas of the skin.

The symptoms of Albinism is based on the type of Albinism that an individual has. However,  the general symptoms are:

  • lack of pigment or color in the hair, skin or eyes
  • there might be patches of skin that have an absence of color
  • strabismus, i.e. cross eyes
  • photophobia, i.e. sensitive to light
  • nystagmus, which I have, this is the involuntary rapid eye movement
  • impaired vision or blindness
  • astigmatism

Ebongue has built his dream library in Douala where people with albinism can read

Individuals with Albinism are prone to have skin cancer, blindness, and rashy skin. There is no cure to Albinism. However, it is recommended that individual with Albinism should do the following:

  • wear sunglasses to protect their eyes from ultraviolet (UV) rays
  • wear protective clothing and sunscreen
  • surgery on the muscles of the eyes to correct the involuntary movement of the eyes.

Battling the symptoms and the limitations that Albinism comes with is not the only fight to be fought, but the complex social problems and discriminations is a greater battle to be fought. If you are an individual with Albinism, please be safe and travel wisely. This world has more hidden enemies than you think. If you have friends who have albinism, please inform them of what you’ve learned.

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