Albinism affects one in 17,000 persons in the world. In Kenya, Persons with albinism are estimated to number 9,720, according to the 2019 Kenya National Population and Housing census. As a rare condition, albinism is one of the widely misunderstood medical disorders both medically and socially. The misunderstandings have led to stigmatization and exclusion of persons with albinism. One of the ways to clear these misunderstandings is to create awareness about the condition by telling others about it. So, how does one best explain albinism to friends and colleagues?
That it is a rare medical condition
Albinism is a rare genetic condition that affects at least one in 5,000 people in Africa. The condition is caused by the impaired production of melanin in the eyes, skin, and hair. Melanin is the pigment responsible for the color of these body parts and it protects the skin from the harmful ultraviolet (UV) rays of the sun. Thus, without it, a person with albinism is at risk of severe sunburn and developing skin cancer.
That there are different categories of Albinism
Since the condition affects different genes in different people, there are different types of albinism. This explains why one person with albinism could have dark hair color while another one’s hair could be brown. The main types of albinism are Oculocutaneous Albinism (OCA) and Ocular Albinism. OCA is the common type of albinism and mainly affects the hair, skin, and eyes. This type of albinism is further divided into more categories. Ocular albinism on the other hand is rarer and mainly affects the eyes. The various types of albinism also lead to a variation in the severity of the condition among persons.
That it is not contagious
Contrary to popular belief that albinism is a contagious condition; it is not. It cannot be spread from one person to the other. Being a genetic condition, the only way that a person can get albinism is if they inherited it from their parents. Thus, one can only be born with it and cannot contract it later.
That it is not curable
Being a genetic condition, albinism cannot be cured; the affected person will live with it for the rest of their lives. The most health professionals can do is to provide relief for the accompanying defects to enhance quality of life. Such relief includes the provision of prescription eyeglasses to correct vision defects. Persons with albinism use sunscreen to protect their skin from sunburn caused by harsh sun rays. Other precautions that persons with albinism take include limiting outdoor activities to early morning or late evening to avoid sunburn and wearing wide-brimmed hats, long-sleeved shirts, and full-length trousers to avoid exposing the skin to sun rays.
That it does not compromise a person's social development
Albinism does not affect a person’s personal development. Persons with albinism can lead an ordinary life just like any other person without the condition. All that a person with albinism needs is a good support system like any other person and the correct protective measures and they will be able to achieve their full potential. For instance, in Kenya, Lady Justice Mumbi Ngugi, a High Court Judge, and politician Isaac Mwaura, are two people who are proof that a person with albinism can live life to the fullest. The only challenge is that persons with albinism are socially excluded in society due to the stigma associated with their condition. However, with good awareness creation, the stigma too can be defeated.