At Beyond Suncare we have been working with and for people with albinism in Africa for more than a decade, but it is true that albinism remains a largely unknown genetic condition. That’s why today we want to tell you 10 things you may not have known about albinism.
1.It is a genetic condition
Albinism is a genetic condition characterized by the absence or decrease of melanin or pigment in the skin, hair and eyes, producing significant alterations in vision. Depending on the type of albinism, people with albinism have very light skin, eyes and hair.
2.Different types of albinism
There are many types of albinism and not all people with albinism manifest the same symptoms. Historically, two main types of albinism have been defined, called oculocutaneous albinism (OCA) and ocular albinism (OA), depending on whether the decrease or absence of pigment affects the skin, hair and eyes (OCA) or mainly the eyes (OA). In turn, each of these two types can be subdivided into several, depending on which gene is affected.
People with albinism suffer from severe visual disturbances, however the degree of affection may vary. Some suffer from the absence of the central retina of the eye, so that night or twilight vision is also reduced, photophobia, which is the rejection or repulsion to direct light, and reduced or non-existent three-dimensional vision. Their visual impairment is severe, as they usually have a visual acuity that can be less than 10%.
Photo © Ana Palacios
4.Involuntary eye movement
Nystagmus is often an important element in the diagnosis. It is the involuntary movement of the eyes as their retina constantly needs to fixate, focus and focus on an object.
5.More likely in Africa
Albinism is one of the so-called rare diseases. In Europe and North America it is estimated that about 1 in 17,000 people are born with one of the 20 known types of albinism. However, in some African countries such as Tanzania, this proportion can be 10 times higher.
6.Importance of taking care of the skin against sun damage
People with albinism, because they have little or no skin pigmentation, which is what protects against radiation, must take care of their skin as they are more unprotected against solar radiation. In African countries such as Tanzania and Malawi, the main cause of their extreme vulnerability is the sun: skin cancer kills 9 out of 10 people with albinism before the age of 30.
Photo © Ana Palacios
7.Albinism is not a disease
As we have already mentioned, albinism is a genetic condition, therefore people with albinism, even though they have a visual disability, can lead a completely normal life. You can read the stories of our ambassadors: Susana Rodriguez and Adi Iglesias, Paralympic champions who made history in the last Tokyo Olympics.
8.In Malawi there are only 2 dermatologists practicing in the entire country
In sub-Saharan Africa, poor diagnosis and treatment, inadequate health services, inability to adequately treat skin diseases and lack of prioritization of national health systems in the field of albinism and dermatology are some of the major challenges.
For example in Malawi there are only two dermatologists and about thirty dermatology technicians for a population of almost 20 million. This explains the high incidence of skin cancer among people with albinism. According to international institutions such as FAO, 85% of Malawi’s population lives in rural areas and more than 90% of dermatological services are in urban hospitals. For these reasons, training of health workers in rural areas is very important to prevent skin cancer. It is essential to decentralize services and ensure that health workers in rural and semi-urban areas close to where people with albinism live are trained.
Albinism is an unknown condition in many communities in sub-Saharan Africa. People with albinism are discriminated against and have serious problems integrating into society. Their vulnerable situation condemns them to extreme poverty, forcing them to earn a living by working outdoors, exposed for long hours to the intense tropical sun. In many sub-Saharan African countries, people with albinism suffer discrimination and ostracism and are seen as a curse. Some cultures believe that they do not die, but disappear, or that having sex with a person with albinism cures AIDS.
10. Education and awareness
Education and awareness-raising are essential to dispel the myths and beliefs surrounding albinism, especially in sub-Saharan Africa. It is essential that health personnel are aware of this genetic condition, but also other very important actors such as educators, since many children with albinism drop out of school at an early age because they lack the tools to be able to read the blackboard or books properly.