What Is Albinism? - Caraguapa.org

Is it a disease?

No, albinism is not a disease, it is a genetic condition that affects all animals. Globally it is characterized by alterations in vision and may appear associated or not, to an absence or reduction of melanin in the skin, eyes and hair.

People with albinism (PCA, in English, people with albinism, PWA) are born with the albino condition, do not "go back" albinos or "suffer" or "suffer" albinism, but "are" people with albinism. It is therefore important to refer to albinism as a genetic condition and not as a disease.

What are the main symptoms or problems of albinism?

Decrease or absence of pigmentation

The lack of pigmentation in the eyes produces photophobia and tend to be protected with shadows, arms or glasses. Therefore, the main limitations of albino people are not those derived from their lack of body pigmentation but those derived from their lack of ocular pigmentation.

People with albinism usually have a total lack of pigment in skin, hair and eyes. This lack of pigment makes them unprotected against solar radiation and burn easily. They do not get dark, they redden. That is why it is so important that people with albinism protect themselves from the sun by wearing appropriate clothes, hats and sun creams.

In Tanzania, being an area of ​​the world with a high index of ultra-violet rays, people with albinism get skin cancer very easily and this makes, together with the killings by supertitions, that their life expectancy decreases until 30 years.

Decreased visual acuity

All people with albinism have alterations such as the absence of a fovea (like a camera that takes super pixilated photos), reduced night vision, strabismus and nystagmus (the eyes move horizontally from one side to the other all the time). This causes their visual acuity to decrease so much that in many cases they are considered legally blind.

In Tanzania, discrimination:

Being a person with albinism in Tanzania in addition to all the above, implies being rejected socially for being "different" to the rest, but if we add to that many of these children are looking to trade with their bodies, their death sentence is signed from the moment they are born.

How frequent is albinism?

In Europe, albinism affects approximately one in every 17,000 people born. In Spain it currently corresponds to some 3,000 people. This low prevalence in the population causes albinism to be incorporated into what are called rare diseases (those that affect less than 5 people per 10,000 births) even if it is not a disease.

In Africa, however, one in every 2,000 people is born with albinism and in Tanzania, where we work, the rate drops to one in 1400 people. That is to say that in Tanzania live between 200,000 and 300,000 people with Albinism. This amount varies greatly because many parents hide their children out of fear or shame and there is no reliable record.