National Albinism Month shines spotlight on injustices

KwaThema – In commemoration of National Albinism Awareness Month, Kwatsaduza Albinism Society hosted a workshop at KwaThema Skills Centre on Tuesday.

Ekurhuleni Social Development Directorate and National Health Laboratory Services at University of Witwatersrand in the human genetics division, partnered with the society under the theme of ‘Understanding Albinism: Engage,Educate, Empower’.

“The objective of the workshop was to engage health and social departments about albinism and the issues that people who live with it face,” says Mandla Gininda, founder of the society.

“We need to educate parents and guardians of people with albinism, health promoters and social workers about albinism, treatment, prevention, care and how it affects lives.”

Health promoters and social workers were encouraged to remain sensitive in helping address the challenges facing people with albinism, including social exclusion, stigmatisation, dehumanisation and discrimination associated with the condition.

Fulufhelo Mudau, Selope Thema Clinic health promoter, explained there are concerns regarding the way in which health and social issues are addressed.

“The aim is to bring together authorities interested in pursuing interventions to deal with the ostracising of people living with albinism.”

“The workshop is the first of its kind in Ekurhuleni East.

One of the steps we are taking to create a society that is free and just, inclusive of all people with genetic disorders as equal citizens and tackling the discrimination problem,” adds Gininda.

He urges the community to mark the day as one that reminds their consciousness to care, love, protect and create equal opportunities for people with albinism.

Johannes Wolela, who lives with albinism, calls for unity among people with albinism.

“Parents need to stop hiding and abandoning their children born with albinism.

“And we need to stand together.”

Dr Thandiswa Ngcungcu explained how albinism is inherited.

“It is genetic, passed through the bloodline in families.”

Dr Njabulo Mabaso, a clinician, says clinical consideration and management, discussion around myths and superstitions were presented by genetic counsellors.

“People in black communities have many myths that contribute to the ill treatment of people living with albinism.

“It is only through being taught what it really is that these myths can be bust.”

Dr Robyn Kerr concluded the workshop by presenting treatment and support.