Albinism in spotlight
NOMASONTO Mazibuko, the outspoken president of the Albinism Society of Southern Africa, is happiest this month because this is her busiest time of the year.
Campaign for tolerance and acceptance - People with albinism are human beings too, like you and I
"September, popularly known as Heritage Month, is also Albinism Month. It is a time when people with albinism enjoy the community education and awareness spotlight," Mazibuko explained.
Albinism refers to a group of inherited conditions. People with albinism have little or no pigment in their eyes, skin or hair. They inherit altered genes that do not make the usual amount of a pigment called melanin.
It affects people from all races. Most children with albinism are born to parents who have normal hair and eye colour for their ethnic backgrounds.
Mazibuko, who is still mourning her brother and the society's (Assa) chief executive officer Tony Ngwenya, said albinism is a grossly misunderstood condition that has recently been declared a disability by the United Nations.
She added that people with albinism in Africa lead uneasy lives, especially in Tanzania and Kenya, where ritual murders are rife.
She is also a board member of the African Decade, a Pan-African advocacy movement for the disabled, including people with albinism .
Mazibuko said she was delighted because she will be officiating at a birthday of a child with albinism who turns one on September 11 in Soweto.
"This is part of the work of Assa. We encourage families not to hide away their children with albinism. Parents who give birth to children with albinism are also counselled and supported because albinism is not supposed to be regarded as a curse," Mazibuko said.
On September 17 and 18, she will be in Pampierstad in Northern Cape where she will run education, awareness and advocacy workshops for families, schools and groups catering for people and children with albinism.
"Community events, where we are assisted by industrious health department genetics workers such as Northern Cape's Susie Peterson, helps us to unravel the albinism-perceived phenomenon," Mazibuko said.
She will also be in Thohoyandou in Limpopo on September 28 for yet another workshop taking place at Ligege High School where young Tshilisanani Nedombeloni was crowned the overall winner of the National Schools Essay Competition on Albinism in 2006.
Sadly, lack of sponsorship has stymied the progress of the contest, for which Sowetan and the Aggrey Klaaste Nation Building Foundation are media, publicity and nation building sponsors.
"But we are going ahead with the competition because the youth are key to ensuring society understands and appreciates people with albinism. We encourage high school pupils to write essays on Albinism: Being Different In My Community; Albinism: Experiences of a Teenager With Albinism; Albinism: How I Relate To People With Albinism and Albinism: A Disability Or Not."
Mazibuko, who turned "a glorious 60" on May 14, will also continue her regular motivational and inspirational talks in the genetics department at the Chris Hani-Baragwanath Hospital in Soweto.
"But the big moments this month, on September 25 and 26, are the weddings of our young members Khanyi Magagula to another person with albinism and Mangaliso Ngcobo to a normal-skinned person.
"These two happy life-changing events show that people with albinism are human beings too, like you and I," she said.
Lebhujwerr
It says everyone shall be treated with love & care not be discriminated .. you stupid ugly smelling Blackbutterfly ..Report Abuse