Albinism demystified

By Byron Mutingwende

 

For Sharon Gumbi, living up to the age of 30 is a miracle. Her biological mother was banished from home by her father soon after her birth. Sharon had to live with her grandparents in rural Filabusi, Matebeleland South Province until the age of 13.

 

“My grandparents became my foster parents after I was disowned by my biological father. I remember walking long distances barefooted to get to school as a young girl. At school, I was verbally and physically abused by my classmates and other pupils who called me all sorts of names,” narrated Sharon, a young lady with albinism.

 

Among the derogatory names Sharon remembers are Murungudunhu which means black person with white skin. As a teenager, Sharon recalls having trouble accepting proposals of love from boys.

 

“Like any other adolescent girl, I had feelings of love for boys but I couldn’t date them because my parents used to say that boys wanted to experiment with people with albinism. I could have refused some who had genuine love for me on the assumption that they only wanted to abuse me,” recalls Sharon.

 

At 21 years of age, Sharon was forced into a marriage of convenience and had two unplanned children in a very short space of time. She has horrible memories of the marriage as she endured a barrage of ridicule and verbal assault from the husband’s relatives. The marriage failed.

 

After a few years as a single mother and a divorcee, Sharon picked up herself and trained as a community health caregiver. She said finding a job was a nightmare because of her skin condition. Despite all these challenges, Sharon’s dream of encouraging people with albinism to reach their dreams and live a normal life drove her to form the Princess Safety Centre to which she is the founding president.

 

Sharon is not alone in this fight. People with albinism face many challenges around the world. There are myths and misconceptions regarding this condition. One such is the belief that one gets cured of HIV and AIDS after heaving sexual intercourse with a person with albinism. In some instances, the people with this condition are killed for ritual purposes in the belief that their body parts may bring good fortune and wealth.

 

Loveness Mainato, the founder of Albino Charity Organisation of Zimbabwe had a similar ordeal of stigma and discrimination. She is a mother to children with albinism and endured abuse at the hands of her husband’s relatives. It did not end there as landlords shunned taking parents of children with albinism as tenants. Mainato encouraged medical doctors to explain albinism as a biological condition so as to improve people’s understanding.

Mercy Maunganidze, from the Zimbabwe Albino Association thanked the government for the provision of the žAssistant Medical Treatment Order, facilitating the pursuance of higher and tertiary education, providing social grants and large print exam papers and textbooks as well as including people with albinism on the Basic Education Assistance Module (BEAM) programme. Maunganidze also hailed the inclusion of sunscreen lotion on the essential drug list.

žShe appealed for stakeholders to provide people with albinism spectacles and assistive technology; reasonable accommodation in schools; and prevention, early detection and early treatment of skin cancer and awareness programmes on skin cancer.

Albinism is a genetically inherited condition that results from the lack of melanin pigment in the hair, skin and eyes which causes vulnerability to sun exposure. This can lead to skin cancer and/or severe visual impairment. According to the World Health Organisation, estimates of people with albinism vary from 1 in 5, 000 people in Sub-Saharan Africa. From recent surveys, Zimbabwe has about 39, 000 people with albinism.

 

Horrifying myths and beliefs regarding people with albinism are prevalent across the Sub-Saharan African Region, and in some cases ritual killings of people with albinism are reported in some countries such as Malawi, Kenya, Tanzania and Mozambique.

 

In his address in Harare on 11 October 2017 at the launch of “friends with albinism” campaign, spearheaded by Zimplats in partnership with the government, Patrick Zhuwao, the minister of public service, labour and social welfare said there was need to interrelate and support the shared needs and rights of persons with albinism.

 

“Albinism is still misunderstood and this is shown by a range of prejudices and social stigma being faced by people with albinism. These emanate from myths and misconceptions, which foster their marginalisation and social exclusion. It is for these reasons that as a nation we need to raise awareness and protect our fellow citizens against discrimination and abuse,” Zhuwao said.

 

Zhuwao said sunscreen lotion for people with albinism should be distributed and availed in the same manner with antiretroviral therapy as the country registered great strides in reducing the HIV prevalence.

 

The United Nations General Assembly set aside 13 June as International Albinism Awareness Day aimed at reflecting on the plight of people with albinism and call upon every individual to respect their rights.

 

It is the state’s responsibility through the Disabled Person Act of 1992 to ensure that persons with disabilities including persons with albinism receive social protection services.

 

Speaking on the same occasion, Alex Mhembere, the Chief Executive Officer of Zimplats there was a need to raise awareness on albinism.

 

“The general ignorance of the cause of albinism translates into fear, scorn, hate, or plain prejudice against people with albinism, thereby adversely affecting their day to day life. This campaign is designed to drive the integration of people with albinism in Zimbabwe and stop discrimination by showing that we are all equal in every respect,” Mhembere said.

 

There is a call for business, church and community leaders to join the campaign to educate people on albinism and facilitate the distribution of sun protection materials in the form of skin creams, hats, lip balm and spectacles.

 

Optinova Africa has joined the campaign in line with its corporate social responsibility strategy where its objective is to achieve visual acuity for all disadvantaged Africans who have little or no access to eye health services. The company donated sunglasses to selected members of the Zimbabwe Albino Association.

 




Leave a Reply

Your email address will not be published. Required fields are marked *