What is Albinism? - The fear and threats of Albinos in Africa

While I was going through a few articles, I accidentally came across this article that was published on National Geographic “Inside the lives of Albinos in Tanzania”, which left me heartbroken. So many evil things happen around this world, but not everyone is aware. What happens, where it happens and why it happens? Sometimes these questions remain a mystery. I quickly sat down to research about this.

This article is written to create an awareness of the threats and challenges these people are facing in a particular part of the world and to be honest, I myself do not know how I completed this hub, because it was so heart-breaking and painful to read, see and watch all those sufferings these people go through on a daily basis. It was quite challenging. Writing a hub on this issue, I thought will reach a few more audience who are unaware of these happenings. This will also help people reach out and support if possible in some way or the other.

Please correct me, if I have any wrong information here, or if there is anything here that is mentioned in an incorrect form.

The documentary “In the shadow of the Sun” by Harry Freeland, lets one feel the fear and pain that the albinos in Tanzania experience every single day. This documentary was shot over a period of four years and tells the story of two different members in the albino community.

The word albino comes from the Latin word “Albus” which means “white”. Albinism, is a congenital pigment disorder that is characterised by complete or partial absence of pigmentation in the skin, hair and eyes. It also has other names called achromia, achromasia or achromatosis. This is due to the absence of tyrosinase which is an enzyme that controls the rate of production of melanin. Albinism is found to affect all vertebrates including humans.

Vertebrate – Vertebrates are the most advanced organisms. They are animals that have a spinal cord, vertebrae, notochord and a brain. Vertebrates are mammals, reptiles, birds, amphibians and fish.

So before getting into the threats and fear these people suffer from, let us briefly look at the effects, signs, types and treatments available for albinism.

There are cells called melanocytes that produce a pigment called melanin, which gives colour to the skin and protects it from the harmful effects of Sun’s rays. When melanin is absent, it leads to albinism. Albinism can affect anyone regardless of gender or ethnicity.

1. Vision defects like photophobia, nystagmus, astigmatism
2. Lack of skin pigmentation which leads to sunburns and skin cancer and hence need to use sunscreen and protective clothing when outdoors
3. Deficiency in transportation of melanin granules
4. Susceptibility to infection because essential granules in immune cells are affected

There are two types of albinism in humans

1. Oculocutaneous – affects skin, hair and eyes. These humans appear white or pale to pink as the melanin pigments which are responsible for the skin colour is absent. Their hair can be either platinum colour or white and their eyes can have a pink to lavender colour. Melanin is also responsible for skin protection from Sun’s UV radiation, and hence the skin of these people can burn more easily.
2. Ocular – Affects only the eyes. So these people will look normal in appearance but will have pale blue eyes. Diagnosis is done by genetic testing. In some people lack of pigment in eyes can lead to red or purple colour eyes which means the red coloured retina is visible through the iris due to less opacity resulting in problems with vision. The Iris lacks enough pigmentation that is necessary to block excess light. In some cases, hearing nerves may be affected and they may develop hearing problems.

The optical system in the eye is greatly dependant on the amount of melanin. If it is less or absent, it can lead to the following visual problems and eye conditions.

1. Abnormal decussation of optic nerve fibres
2. Photophobia - extreme sensitivity to light due to no or less pigment in Iris
3. Macular or Foveal hypoplasia leading to retinal damage – affects central vision
4. Nystagmus – irregular movement of eyes. It can be either circular or back and forth. Vision fluctuates and worsens when the person is stressed or tired. This is involuntary.
5. Astigmatism – Irregular shaped cornea and hence will not be able to see things clearly
6. Amblyopia – decrease in sharpness of vision due to poor transmission to brain
7. Optic nerve misrouting – signals sent from retina to brain are misrouted
8. Strabismus – Lack of eye alignment, which means the inability to use both eyes together. As a result eyes can either be crossed or deviate from the center.
9. Farsightedness – Can see distant objects clearer but have difficulty seeing nearer ones
10. Nearsightedness – Can see near objects clearer, but have difficulty seeing farther ones

Albinos are generally healthy like the rest of the population, with the only difference being high risk of skin cancer and other related problems. Albinism can be exhibited in off-springs who are born to parents with no albinism too, as these parents can have genes for albinism even without any symptoms or traits of albinism. A parent with no albinism and a parent with albinism do not necessarily need to have an offspring who has albinism. Albinism affects people of all backgrounds. One in 17000 people are affected by albinism and is the highest in the Sub Saharan descents in Africa.

• Hypomelanism (hypomelanosis) – partial lack of melanin
• Amelanism (amelanosis) – total lack of melanin

• Eye defects or conditions can be treated by surgeries on the ocular muscles. The effect of the surgery varies with individuals.
• Albinos will require vision aids, large prints, bright reading lights, magnifiers, bifocals etc to aid reading.
• They can wear protective lenses to reduce light sensitivity.

• Albinistic humans are victims of discrimination and violence in some parts of the world.
• In some African countries, albinos are killed and their body parts are sold for witchcraft
• National geographic estimates that in Tanzania, a complete set of Albino body parts is worth $75,000
• People with albinism can go through emotional stress and difficulties when out in the public.
• Some communities even believe that intercourse with an albinistic woman will cure a man of HIV (sources say that about 1.4 million Tanzanians have HIV)
• Albino children face difficulties in completing education due to poor vision and feeble educational infrastructure. Also discrimination and discouragement from families and others leads them to growing up as illiterates and ending up in menial jobs.
• Witch doctors earn a fortune selling potions made from the bones, hair and skin of Albinos. Miners (pour in ground to find minerals) and fisherman (pour in their canoe) use this believing that it will bring them wealth and luck.
• Many families are split due to the fact that albinistic members are sent away from home to areas or centers of protection
• There are many single mothers who have been abandoned by the fathers of Albinistic children, who accuse their wives of having affair with white men.

Listed below are information I gathered from across various sources, mainly news websites, journals and articles and are all related to the threats Albinos face in a particular part of the world.

1. An albino child in Swaziland was grabbed and shot by a man while washing clothes and bathing in a river with her friends. Her body was found headless later on during the day by the river. Another eleven year old Albino girl was killed in the same spot and her hand removed. Police believe that they were murdered to be sold to the witch doctors who believe that blood and body parts of Albinos can bring luck and fortune when used in potions.
2. An article published on wlrn.org in November 2012 states, life of Albinos is difficult in many parts of Africa, and is worse in Tanzania which has the highest rate of Albinos in the world (1 in every 1,400). It is believed that more than 100 Albinos have been attacked in Tanzania in the past six years where 71 died and 31 escaped. It is also believed that they are attacked and killed to be sold to the witch doctors. The government has now taken measures to protect Albinos. The documentary “Spell of the Albino” by film maker Claudio von Planta and various other activists have helped publicise this issue and Albino murders are decreasing.
3. There is a story from India published in thesun.co.uk in March 2012, about the biggest Albino family in the world. They are a family of ten people who are in line for the Guinness world record. This family lives in Delhi and they all have pale skin, white hair and poor vision.

4. A few excerpts from a news in 2008 from the nytimes.com related to Albinos in Tanzania :

• Discrimination against albinos is a serious issue throughout Sub-Saharan Africa and is the worst in Tanzania
• Witch doctors are selling potions that contain skins, bones and hair of Albinos and are marketing them promising that it will make people rich
• Police officers have details of Albinos in the country in order to protect them
• Many Albino children drop out of school due to poor eyesight and they find it difficult to find a job due to discrimination.
• There are non-profit groups in Tanzania who help the albinos in the society, but their services are restricted as they are operating on less than $15,000 a year, which is not sufficient to look after all their needs.
• Fishermen have superstitious beliefs and they weave Albino hair on their nets, believing it will bring in more fish
• People call the albinos “A deal” and attack them, kill them and sell their body parts to make money .

5. A news on igihe.com from January 2013 states that Ms Vicky Ntetema who works towards overcoming Albino killings in Tanzania still gets death threats from witch doctors.

6. An article from campusjournal.ug on October 2012 states that Albinos face many challenges apart from their vision and skin related issues, which are social and cultural threats, discrimination, violence, etc., as a result of which, certain communities kill them after birth to avoid discrimination. Those who manage to finish school despite all the discrimination face discrimination at work.

7. A news from bbc.co.uk in July 2008 states that a seven month old baby was mutilated on the orders of a witch doctor. People involved in albino killings are 173 so far in police custody and none have been prosecuted.

8. News on CNN.co.uk from October 2012 tells that Tanzanians hold strong belief in witch craft.

9. News from nbcnews.com from November 2009 states that a ten year old albino boy was beheaded. In 2007, 44 Albinos have been killed in Tanzania and at least 10,000 albinos have gone into hiding or to different parts of the country since the killings began.

10. According to the article published on National Geographic, there are hostels and boarding schools for Albino children where they are protected from hunters and witch doctors, but it is not a long-term safety measure.

The stories go on. There are hundreds of stories on the internet and there are documentaries that tell us about the life of albinos and the threats they face in their daily life

While these threats and violence go around, there are and have been many famous people with albinism all around the world. And also a news from bbc.co.uk from October 2012 states that Albino models have set a trend for Africa.

US albino supermodel Diandra Forrest says that her presence in the Africa fashion week has greater significance than just beauty. Also International designers like to use Albino models.

The information below is from infobarrel.com about some famous Albinos from all over the world.

• Johny Winter – A Grammy Award-winning guitarist, singer and producer
• Salif Keita - Internationally recognized afro-pop singer-songwriter
• King Edward the Confessor of England - Last king of the House of Wessex
• William Archibald Spooner - A famous Don who became prominent for his “spoonerisms
• Emperor Seinei of Japan - Japan’s 22^ndemperor
• Connie Chiu - World’s first albino supermodel