In recognition of World Albinism Day, Malisema Mahloane talks to a young vibrant lady Malekhotla Mahooe, who has made it through many trials in life regarding her skin condition. She explains boldly in detail what albinism is and why citizens should be aware of albinism day while redirecting people with such.
Malekhotla Mahooe is a media practitioner from Ha Lebamang Roma in Maseru who has lived with challenges associated with albinism but however against all odds. She had become an outstanding albino model, albinism activist and radio presenter at a local radio station in the capital city Maseru.
Growing up, my parents had always taken good care of me, provided all that I needed. I always had to play in the shade even if I had worn sunscreen, a hat and long sleeved shirts and long trousers. Eventhough it was my family’s signature to always put on a hat, I was the most scolded if ever I went out without a hat on.
I was however always teased about looking very closely at things and that I have fair skin tone and hair at every place I visited. Getting constant random stares all the time and being called out with nasty names by children and their parents had become my everyday life event. Surprisingly I never teased back or even fight, I just got used to the events and kept the feeling to myself, I never even talked about it to anybody even my parents never knew how I felt about all that.
I began school at T.Y ECCD, began primary at T.Y English Medium school and completed the level at Tholoan’a Bophelo English Medium school, St Mary’s high school and Limkokwing university.
Albinism is a genetic disorder that results in decreased production of a pigment called melanin in the skin, hair, and eyes, resulting in light color or no color. There are several genetic mutations that cause albinism. This condition occurs throughout the world; it affects 1 in 20,000 Americans and is more common in other parts of the world, such as in Zimbabwe, Africa, where 1 in 1,000 people have some form of albinism. Currently there is no cure for albinism, however it can be managed using sunscreen, protective clothing, eyeglasses, magnifying glasses, or eye surgery for eye abnormalities. The impact of this condition on people’s lives can be devastating, so it is important to foster a positive and tolerant environment to promote the emotional and mental well-being of those who are affected.
To continue its very important for people to be made aware about conditions such as Albinism as they still lack knowledge about it, people with albinism still face a lot of criticism and insults due to the condition. People still lack knowledge on how to take care of people with albinism. For this reason it is important to celebrate June 13th since albinism awareness day is important to remind people that people with albinism do exist and are supposed to be treated like anybody else. People should be taught a lot about all skin conditions so as for them to have an idea about them.
There are however critical aspects about albinism most overlooked. People with albinism have skills like anybody else too but due to stigma they are often denied opportunities. People with albinism uniqueness comes from their different skin tone only and they can do everything that everyone else does.
There are different types of albinism, and here I explain how we identify people with such.
OCULOCUTANEOUS ALBINISM which also has several subtypes;
OCULOCUTANEOUS 1 which also has types. #Oculocutaneous 1a: People in this category have a complete absence of melanin, this is the pigment that gives skin, eyes and hair colouring. People with this type have white hair, very pale skin and light eyes.
#Oculocutaneous 1b: People with this type produce some melanin, they have light coloured skin, hair and eyes. Their colouring may increase as they age.
Oculocutaneous 2 This type is less severe than OCA 1. It’s due to a defect in the OCA 2 gene that result in reduced melanin production. People with OCA 2 are born with light colouring and skin. Their hair maybe yellow, blonde or light brown. OCA2 is most common in people of African descent and Native Americans.
OCA3 This one is a defect in the TYRP1 gene. It usually affects people people with dark skin, particularly Black South Africans. They have reddish-brown skin, reddish hair and hazel or brown eyes.
OCA4 It is due to a defect in the SLC45A2 protein. It results in a minimal production of melanin and commonly appears in people of East Asian descent. They have same symptoms as people with OCA2.
I still think people living with albinism are stigmatized in Lesotho societies. Well we have come a long way trying to teach people about albinism but if we still have cases where a man would divorce a wide for giving birth to a child with albinism then it means we still are not treated as people. We still have cases where a mother would abandon a child because it has albinism. If we still get teased and insulted and be denied opportunities then we are still not treated like anyone else. If men still think having sex with a person with albinism will give him luck or cure HIV then it’s still something else. I mean I still get approached for shaking hands in order for then to regain luck.
Lastly there are social issues related to albinism, how should they be addressed? From my view, people should really admit to learn and be taught about albinism like any other conditions. They should not hesitate giving them opportunities and a helping hand where needed.