Definition of albinism
Albinism refers to a group of inherited conditions that causes little or no pigmentation in the eyes, skin or hair. A genetic mutation that causes a lack or deficiency in melanin in the body, the photo-protective pigment that protects us from the sun’s harmful ultraviolet rays, resulting in physical characteristics like white or light blond hair, violet to blue eyes, very pale skin that is particularly sensitive to the sun. Without sufficient melanin, our eyes are unable to function properly and nerve connections to the brain are also altered. We, as People with albinism are therefore often characterized by long-sleeved clothing, hats and prescription glasses as a measure of protection against the sun.
Causes of albinism
Albinism is caused by a mutation in one of several different genes involved in making the pigment melanin.
Types and categories of albinism
There are 2 main types of albinism.
- Oculocutaneous albinism [OCA]
- Ocular [OA]
OCA I is mostly an autosomal recessive disorder whereas OA is transmitted as a sex linked or autosomal recessive disease.
OA is divided into 10 different types. Two of the more common forms are type 1 tyrosinase-negative and type 2 turosinase-positive. OCA patients with type 1 have no skin or ocular pigmentation, whereas those with type 2 disease can develop some pigmentation as they grow older. However there are several other types of albinism caused by several genes. In one form of albinism, 1 the Hermansky-Pudlock syndrome [HPS] which is caused by a single gene there can be problems with bleeding and with lung and bowel disease as well. This syndrome is far less common form of albinism, other common complex diseases- such as Chediak – Hagashi syndrome [lack of colouring all over the skin] but not complete and tuber sclerosis [small areas without skin colouring] may lead to lack of colouring especially
Characteristics of albinism
White or light blond hair, violet to blue eyes, very pale skin that is particularly sensitive to the sun. Without sufficient melanin, our eyes are unable to function properly and nerve connections to the brain are also altered. We, as People with albinism are therefore often characterized by long-sleeved clothing, hats and prescription glasses as a measure of protection against the sun.
Prevalence of albinism
Although albinism can affect all races and ethnic groups, some parts of the world including Africa have a much higher rate. For example one in 35 south African blacks is a carrier of albinism mutation. [olade 2007]
In addition one in every 4,000 people in South Africa is born with albinism: in contrast, in Denmark, the figures are only 1 in 60,000 (parliament forum on small arms and light weapons 2009). The type of albinism prevalent in n the United States of America is type 1 (tyrosinase-negative).
The frequency of this type of albinism is about 1 in every 20,000
Tyrosinase –positive albinism is the moist prevalent type found through out Africa.
Where in can range from 1 in every 2000 to 1 in every 5000..
This type is also higher in African American population where it can be found where it van be found in the ratio of 1 in every 10, 000as compared to 1in every 36000 among Caucasian-Americans. Similarly, the frequency of Hermannsky –Pudlak syndrome is much higher in Puerto Rico where it is approximately one in every 2,700.
Albinism and school work
Various person with albinism have found it difficult schooling and working with the black society without discrimination and stigma.
Pupils in early education have always indicated instances of ridicule from their fellow school mates.
This combined with the ignorance that service providers such as teachers who have lacked sufficient information on the albinism condition which even makes matters worse for pupils with albinism.
For instance, a pupil from Mumbetsa Primary School in Kakamega County reported instances where his Mathematics teacher would literally beat him for failing to see the black board. not knowing that person with albinism have a limitation when it comes to viewing distance writing fro the board.
Ignorant teacher have always complicated matters for bright pupils with albinism who would otherwise have excelled academically if they were given an opportunity.
However the Kenya Institute for Special Education [KISE] has been at the fore front in capturing the aspect of albinism and impairment in its curriculum which his currently building the capacity of more teachers who handle pupils with albinism,
At the high school level, Kenyatta University has been at the fore front in capturing the aspect of albinism in its special education curriculum which has empowered graduate teachers to handle students with albinism both in high school and at tertiary levels.
At the work place person with albinism have reported instances where they have openly discriminated an especially those who work in institutions where employees are not graduates.
Hove in forma employment such as Banks and the Civil Society and the public sector, discrimination is generally low. Institutions which have generally accepted person with albinism and even cared to mainstream to make us comfortable include National Bank of Kenya, Barclays Bank, Safaricom Limited, Kenyatta University, various Government Ministries and state Departments, the Civil Society, and fellow disability organizations