Albinism Facts and Fiction

The past decade has brought news of an atrocity, mainly from Africa: the slaughter of humans with albinism for their body parts for use in ritual magic. Bodies are usually found headless and missing one or more limbs, but sometimes are completely torn apart, missing even internal organs. The reason is, of course, pure unadulterated pseudoscience; we can confidently state that there is no magical benefit to the use of unpigmented body parts, and that's to say nothing of the abhorrence of murder for any purpose. Clearly there are some fictional beliefs out there concerning the nature of people with albinism, and today we're going to look at some more of these beliefs that might be held even by those of us who are not into black magic.

But the use of their body parts in ritual magic is the elephant in the room. Arms and legs are the witch doctors' preferred bits. They are used as charms and talismans, and other body parts also have magical value, such as hair being sewn into fishing nets to bring good luck. About five people with albinism per year are reported to be killed in Africa for their body parts, but the total is probably larger. Perhaps even more frightening is that about the same number of people survive similar attacks, suddenly accosted by men with machetes who hack off the valuable limbs and abscond, with little care for the still-living victim they leave behind. It's quick cash; in Tanzania, a single limb can be worth up to four times the average annual income. A complete human body, chopped apart and sold bit by bit, can be worth more five times what the average Tanzanian can expect to earn in a lifetime; a figure often given in the press is $75,000. Fortunately, over the past few years, witch doctors and attackers have been prosecuted and some have been executed, leading to a reduction in these attacks.

But another problem faced by Africans with albinism is that they are nearly always from broken homes. When some African fathers see their child born white, they assume their wives must have been having affairs with white men. The Albino Association of Kenya says that 90% of people with albinism in that country are raised by single mothers as a result.

There are four basic types of albinism, some of which have subtypes, corresponding to different genetic defects. All are inherited from the parents and are recessive traits; if both parents carry the recessive OCA gene, there is a 1 in 4 chance that their child will have albinism. Depending on which type of albinism you have, you might have no pigment at all anywhere in your body, or even brown hair and eyes and skin only slightly lighter than normal. In most types, the performance of the enzyme tyrosinase is affected, which is responsible for the production of melanin.

It is the most extreme form of albinism, called oculocutaneous albinism type 1 (OCA1 or tyrosinase-related albinism), that results in white hair and very light white skin. Most of the myths surrounding people with albinism stem from OCA1 individuals, and are based on superstition and come mainly from African countries. These myths include:

• Albinism is the result of a curse.
• Raping a woman with albinism will cure a man of AIDS (this myth is most prevalent in Zimbabwe).
• People with albinism can read the future.
• Albinism is contagious.

And of course:

• Unpigmented body parts are useful talismans in black magic.

Correction: An earlier version of this repeated the popular myth that OCA1 individuals have red eyes. Untrue. Most have blue eyes, some have hazel or brown. The amount of pigmentation is reduced, so in certain lighting conditions the eyes can appear to be red. —BD

But there are facts and fictions about our albinistic comrades that even more sophisticated people might not know. Let's run through a true-or-false quiz on some of these questions, and we'll start with an easy one:

People with albinism are from every race and every geography.

True, though the dispersion is far from equal. Estimates vary, but about one in 17,000 people have some form of albinism. In most parts of the world it's less. The mutation first arose in sub-Saharan Africa, and like all genetic conditions, it remains most prevalent among its original population. The rate is highest in Tanzania and Burundi, where albinism affects about 1 in every 1500 people. This is primarily the result of two effects: first, that's the population where the mutation is most common, so it's more likely that both parents are going to be carriers of the recessive gene; and second, social pressures tend to group people with albinism together, where they're more likely to intermarry, greatly increasing the chances of albinistic offspring.

The killing of people with albinism for their body parts is an ancient problem.

False. In fact, nearly all such reports come from the past 20 years. The first conviction for such a murder came in 2009. Some researchers speculate that the problem is most likely older and was just never reported, but the evidence that it's anything but a modern trend is scant.

Albinism may have played a role in the origin of the white race.

False. Albinism can be defined by a specific mutation of a specific gene, and that mutation is not a characteristic of non-albinistic whites. Thus we have genetic proof that intermarriage with whites is not related to albinism among blacks, and albinism is not related to the appearance of white racial characteristics. In fact, we now know that race itself does not exist genetically; there is no way to look at a person's genome and determine his race. Instead, people have inherited physical characteristics that may be prevalent within their population, and may include characteristics such as skin color, hair type, or the shape of eyes, nose, and face.

People with albinism are sterile.

False. There are no albinistic traits that affect the reproductive system, but this myth is surprisingly widely believed. Even doing an Internet search for "albino sterile" reveals discussions about how humans or animals with albinism are sterile; people talk about it as if it's a real thing, even adding details like sterility is more common among males than females. There is no association at all, and I couldn't find any hint as to how or where this myth got started. Often, claims like this are rooted in plain old nonsense stemming from cultural marginalization.

People with albinism have bad eyesight.

True. Almost all people with any type of albinism have at least some vision problems, many of which can be severe. The lack of pigment within the eye, or even a reduction in pigment, can lead to a cascading set of ocular defects. Someone with OCA1 would be lucky to have 20/200 vision. The other vision problems they can expect include hypoplastic fovea, hyperopia, strabismus, photophobia, lack of depth perception, and nystagmus. A lot of these problems are not easily correctable, and as a result, many are considered legally blind although they can usually see well enough to get around and make it through their day, and many can drive.

People with albinism tend to have more developmental difficulties.

True, but only because of the vision problems and social pressures. When you can't read the blackboard or you're ostracized from society and can't go to a normal school, you often fall behind academically. In many less sophisticated countries, this has led to the belief that people with albinism have mental retardation problems, or at best, learning disabilities. In fact they are no more likely to than anyone else, but because of the reasons stated, they are much more likely to be behind developmentally.

There is such a thing as the opposite of albinism.

True. While albinism is the absence of pigment, melanism is an abnormal overproduction of dark pigment. But there are two important notes: first, while there are plenty of examples of melanistic animals, melanistic humans are virtually unknown; and second, like albinism, melanism is a not a single condition but a set of related conditions. You don't see Caucasian people who are dark black all over (which would be kind of cool), but we do see conditions resulting in pigmentation of certain internal organs or uneven pigmentation of the skin.

Animals are another matter. There are beautiful jet-black lions, snakes, penguins who look like they forgot their white tuxedo shirt, you name it. There is also another type of pigmentary disorder called amelanism, where the dark melanin pigment is missing but other lighter colored pigments remain. You won't find any humans or other mammals with amelanism either, because mammals don't produce pigments other than melanin; but animal examples are common. You might have seen white and yellow pythons at the zoo that were incorrectly described as albino; if they were, there wouldn't have been any yellow. Birds can have flamboyant red and yellow beaks from carotenoid pigments.

Correction: An earlier version of this included lions in the list of melanistic animals. No melanistic lions have ever been confirmed; the only big cats known to come in all-black are jaguars and leopards, and they are never completely black. —BD

People with albinism have trouble synthesizing vitamin D.

False. They rock the vitamin D production; in fact, they can synthesize it about five times faster than very dark-skinned individuals. Vitamin D is produced in the skin when ultraviolet-B light enters and provides the energy to chemically transform 7-Dehydrocholesterol, which you need to get from your diet, into calciferol, a.k.a. vitamin D. In an ironic contradiction to some superstitious beliefs, this particular trait is especially valuable in motherhood when the need for calcium is highest, ranking mothers with albinism among the most physically suited.

People with albinism are more likely to die from skin cancer.

True — shockingly, terrifyingly true; and it's probably worse than what you might think is the worst-case scenario. Look at this snip from a 2011 article published in the journal Dermatologic Clinics:

A study amongst individuals with OCA in Tanzania revealed that 100% exhibited skin damage by the first year of life and advanced symptomatic cancers were observed in 50% of those between 20 and 30 years of age, with 1 case of skin cancer in a 9-year-old child. In a Nigerian study, no albinos older than 20 years of age were free of subclinical malignant skin damage and in the 1980s, less than 10% of albinos living around Dar es Salaam survived beyond 30 years of age. Within Tanzania, less than 2% of albino children were expected to reach 40 years of age.

Fortunately, this situation has improved dramatically in recent years, as substantial humanitarian resources have been brought to bear to provide adequate supplies of sunscreen to Africans with albinism, along with sun protection education.

In fact, this is where the really good news is. Persecution and marginalization of these people has probably peaked, and both are almost certain to decline considerably in the future. The number of charity and humanitarian groups focused on the issues facing Africans with this condition has skyrocketed, and their presence is felt throughout the region.

Albinism brings traits that are often seen as desirable in white populations: light or blue eyes, light skin, white or very blond hair. It can even be seen as something of a physical ideal to some. Let's hope that this same appreciation for an amazing and unusual look continues to spread, especially among groups who see it as a defect or as some supernatural curse.

By Brian Dunning
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