What is Albinism

A hereditary congenital disorder that is characterised by a complete or partial absence of pigmentation in the skin, hair and eyes. Albinism results from inheriting recessive genes from both parents which results in lack of, or  defected,  enzymes that produce melanin (pigmentation). Albinism affects people of all ethnic backgrounds and its estimated globally the albinism affects one person in every 20,000 people but is more prevalent in people of Sub-Saharan African descent with frequency of up to one in every 1,000 people in certain populations in east and southern Africa.      

TYPES OF ALBINISM​

Oculocutaneous (OCA)

A group of conditions that affect coloring (pigmentation) of the skin, hair, and eyes. Affected individuals typically have very fair skin and white or light-colored hair. Long-term sun exposure greatly increases the risk of skin damage and skin cancers, including an aggressive form of skin cancer called melanoma, in people with this condition. Oculocutaneous albinism also reduces pigmentation of the colored part of the eye (the iris) and the light-sensitive tissue at the back of the eye (the retina). People with this condition usually have vision problems such as reduced sharpness; rapid, involuntary eye movements (nystagmus); and increased sensitivity to light (photophobia).affecting the skin, eyes and hair. 

Ocular (OA)

Ocular albinism is a genetic condition that primarily affects the eyes. This condition reduces the coloring (pigmentation) of the iris, which is the colored part of the eye, and the retina which is the light-sensitive tissue at the back of the eye. Pigmentation in the eye is essential for normal vision. Ocular albinism is characterized by severely impaired sharpness of vision (visual acuity) and problems with combining vision from both eyes to perceive depth (stereoscopic vision). Although the vision loss is permanent, it does not worsen over time. Unlike some other forms of albinism, ocular albinism does not significantly affect the color of the skin and hair. People with this condition may have a somewhat lighter complexion than other members of their family, but these differences are usually minor.

MEDICAL PROBLEMS ASSOCIATED WITH ALBINISM

IMPAIRED VISION

Due to lack of pigmentation people with albinism suffer from impaired vision and the following as some of the common vision problems associated with albinism :

Visual Acuity  – Reduced vision due to many factors including lack of pigmentation in the eyes

Photophobia  – unrestricted forceful entry of light into the eyes which is painful and causes extreme sensitivity to light. 

Nystagmus – irregular, rapid movement of the eyes back and forth or in circular motion.  

 

ACTINIC DAMAGE

Refers to the solar Ultraviolet Radiation  (UVR) induced dermatological complications, including sunburn, inflammation, photo-aging, solar keratosis, solar urticaria and various skin cancers and benign things like freckles. 

In “normal” skin, there are natural mechanisms that  protect against UVR to reduce actinic damage regardless of skin tone. These include melaninastion due to radiation exposure and keratinisation to protect the skin basal layer, the former being absent in people with albinism. 

SOCIAL PROBLEMS ASSOCIATED WITH ALBINISM

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Albinism is socially stigmatized in many African countries. People with albinism face social and cultural challenges and sometimes even threats. The condition is often a source of ridicule, discrimination or fear.  In some African countries such as Tanzania, an unprecedented witchcraft ritual killings of people with albinism have been on the rise as their body parts are used in potions sold by  witch  doctors.  In other african countries such as Zimbabwe  women with albinism have been rapped and infected with HIV due to dangerous beliefs that sleeping with an albinistic woman cures HIV.



HOW CAN YOU HELP ALLEVIATE THESE PROBLEMS ?

Kindly assist our cause through buying from us our subsidized locally manufactured sunscreen, Kivuli, and donating it to beneficiaries of your choice or through our database of registered beneficiaries. Each and every donation made, saves a beneficiary from potentially developing skin cancer. You can also buy Kivuli in pharmacies near you for use as a sunscreen, all proceeds realized go towards funding of Kivuli donations.   You can also help by registering a beneficiary or by spreading the word.