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Facts about albinism

DR BOIMA
HEALTH ISSUES

September marks an albinism awareness month and the question is how much do we know about this condition locally? There are myths doing rounds and we have heard stories where people living with albinism have suffered the worst of ill-treatments and even been mutilated, especially in Africa. These myths in my view have been propelled by the fact that people do not fully understand what this condition is all about. In this article we will discuss what brings about the condition and how best to live with albinism.

What is albinism?

Albinism is characterized by a reduced or lack of pigment called melanin, which normally gives colour to the skin, hair, and eyes.

The diagnosis of this condition is obvious at birth.

There are two types of albinism; oculocutaneous (affecting the eyes, hair and skin) and ocular (affects just the eyes, while the skin and hair show normal colour).
 

Causes

Albinism is an inherited condition, it is passed from parents to their children through genes (both parents must carry an albinism gene).

Occurrence

Albinism affects people from all races but it is very common in Africans with an incidence 1/ 12,000 among African Americans in the U.S. and a hopping 1/1,000 in Niger compared to the world incidence of 1/ 17,000 births.

Albinism affects both sexes equally, although ocular albinism (less common type of albinism) is found to be more among males.

Most children with albinism are born to parents who have normal hair and eye colour (just albinism gene carriers).

Health implications

Eyes – People with albinism also tend to have a number of eye problems including impaired vision (most of them wear glasses), photophobia (sensitivity to light), strabismus (misalignment of the eye balls), and may demonstrate involuntary movements of the eye (nystagmus).

Skin – People with albinism have extremely sensitive skin and as such they need to be cautious about their skin and make sure they wear protective gear (hats, sunglasses) and apply moisturizers and sunscreens to be protected against sunburn.

Individuals with albinism have an increased risk of developing skin cancers due to their extremely sensitive skin.

Albinism does not affect IQ levels or social development. Children with albinism may appear slower than others in the beginning due to visual problems, but they later develop the ability to cope.

There are other genetic conditions that may be present in patients with albinism though very rarely. Syndromes that may be associated with bleeding and bruising, increased susceptibility to infections, anemia (low blood count), and  hepatomegaly (enlarged liver).

Albinism is not contagious nor can it be transferred from person to person through blood transfusions, contact, or disease-spreading organisms

Albinism does not change life expectancy in the sufferers.

Living with albinism

Though albinism is a lifelong condition and it has no cure (to correct poor or absent pigment production), most health problems arising as a result of albinism can be corrected and managed amicably.

Genetic counseling of affected individuals and their families is recommended. Counselors or Doctors usually provide a detailed explanation of the condition including the chances of future children being affected.

Participation in support groups can help in gathering information and in coping with living with albinism (both physically and psychologically).

Other facts

Not only human beings, plants and animals also suffer from albinism.

Among many celebrities living with albinism are the Mali singer Salif Keita, American actor Michael Bowman and South African model Refilwe Modiselle.

For enquiries and help please email agboima@yahoo.com



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