First Albinism Workshop Fiji School for the Blind
In conjunction with Fiji Society for the Blind and St Vincent’s Hospital, Sydney, the first Albinism workshop was held in November 2014.
Rationale and background
Albinism is an inherited condition, which causes lack of pigmentation of the skin, hair and eyes. It causes a very high risk of skin cancers and usually very poor vision, and can cause social isolation and stigma partly due to a lack of understanding of the condition.
In November 2013, The Fiji Blind Society contacted the Albinism Fellowship of Australia (AFA) asking for assistance regarding albinism in Fiji, particularly at the Fiji School for the Blind.
Dr Margot Whitfeld was contacted by the AFA because of her interest in albinism in Fiji, and her 10 year relationship with the Fiji Ministry of Health. This was through her work as a Dermatologist at Tamavua Twomey Hospital, and the SHIFT project (Skin Health Intervention Fiji Trial), a 3 year Australian and Fijian partnership research project looking at the best way to treat scabies in a community based setting. In addition Dr Whitfeld had become aware of the large number of people with albinism in Fiji, and the large number of skin cancers. These cancers were causing deaths and significant morbidity, even in young people with albinism.
She had recently partnered with Dr Mike Kama to undertake a research project to identify the numbers of people with albinism in Fiji.
Because people with albinism suffer from low vision and a range of different visual disorders that can render them with very low vision to being legally blind, education can become more difficult .
When Mrs Barbara Farouk, Executive Director of the Fiji Society for the Blind and Dr Margot Whitfeld met in early 2014, when Mrs Farouk expressed her desire to have a workshop on Albinism at the Society’s headquarters. She stated that over the preceding eight years they had gone from having only one student at the school with albinism to having more than 30% of the student body being children with albinism. She felt that the community low-vision workers, teachers and parents would benefit from education on the subject.
Dr Whitfeld had also become aware of the lack of information and knowledge amongst the community and health professionals around skin cancers and blindness in people with albinism. She had attended the Albinism Fellowship Australia (AFA) meeting in Australia in 2013, which had over 200 participants, including representation from Fiji, and appreciated that there was a desire for more knowledge amongst the parents, teachers, health care and community workers at that meeting.
As a result of their meeting, and with their different skill sets in health and education, a workshop on: albinism and the skin, albinism and the eyes, sun safety and teaching children with albinism, was planned. The timing at the end of the school year, just before break-up, was selected to allow the parents of the children, at the school, to be able to attend when they collected their children from the school at the end of the year.
Resources and equipment for the workshop were sourced through donations from Australian low vision and skin cancer organisations.