Choose "Healthy Skin Fiji Project"
PEOPLE LIVING WITH ALBINISM IN FIJI
WHAT IS ALBINISM?
Albinism is a genetic condition, which causes lack of pigmentation of the skin, hair and eyes due to the lack of melanin produced in the body. 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. Children with albinism have normal intelligence and no other health issues, relating from albinism, therefore if their educational problems with low vision are addressed and they look after their skin they can lead full and productive lives.
OUR ROLE IN FIJI
The Fiji Albinism Project (FAP) was established in 2015 with support from St Vincent Trust Fund in Australia and the Ministry of Health and Medical Services. FAP is currently hosted by the Fiji Centre for Communicable Disease Control at Mataika House. The FAP has been given an office space and equipment such as computers, tables and chairs. We currently have three staff; a Project officer an Albino lady who has a full time position and two project assistants who work part time. FAP was established to promote positive attitudinal change of the general public on health and social issues that negatively impact the lives of persons with albinism in Fiji.
Sainimili Tawake (FAP Project Officer) Dr Margot Whitfeld (Founder) Seveci Leawere (FAP Assistant) Sr Helen Maguire (Australian Support)
To develop a database in response to the lack of data and information on the health, social and educational status of persons with albinism in Fiji.
To advocate for proper research on Albinism in Fiji and the wider Pacific region.
To raise awareness on issues affecting the lives of persons with albinism at all levels of society.
To build the capacity of key stakeholders such as medical and welfare officers including teachers on issues affecting persons with albinism.
To provide information and support services to persons with albinism on skin care and make referrals
as pathways to appropriate services
To advocate for the development of inclusive framework on social support system for persons with albinism.
Due to low vision , children with albinism are to be allowed to sit at the front of the class with their backs to the windows and move around freely depending on brightness in the room
Have access to large font documents during tests and exams.
Teachers are to help children with albinism avoid the sun as much as possible by giving indoor activities and duties allowing them to enjoy at the same time
Children with Albinism are to be allowed to have their own textbooks rather sharing, to help them with their reading
Teachers are to explain to other pupils of what albinism is, as this will help them better understand the condition and needs of children with albinism and also avoid ill-treatment and bullying in school
Everyone has the right to a good education; therefore Children with albinism share the same right. They have the ability and potential as others and must be treated with equality
INTERNATIONAL ALBINISM AWARENESS DAY
The first ever symposium for persons with albinism was organized in Suva Fiji in August 2015. Two hundred participants representing Government departments, development agencies, civil society organizations, education institutions and persons with albinism gathered and discussed issues on albinism. The symposium provided a platform for engagement on setting directions for the formal establishment of the Fiji Albinism Project (FAP). Prior to this event, a one day workshop on albinism was organized in 2014 by Fiji Society for the Blind and facilitated by Dr Margot Whitfeld who is a Dermatologist at St Vincent Hospital in Australia. A steering committee was formed to implement the recommendations that derived from the workshop which included the organizing of the said symposium.
In June 2017 the third International Albinism Awareness Day was held in Fijji Suva Park, and again this year in June 2018.
This is a day set up to make us aware that children and adults with albinism, known to us as “ rea” in iTaukei, and previously known as albino, have the same human rights as everyone else.
In some countries of the world people with albinism are treated badly and misunderstood and in June 20I3 the UN adopted its first ever resolution on albinism. Following this, the UN Human Rights Council in Geneva recommended to the General Assembly) that the Day is recognised with the first International Albinism Awareness Day being held in 2015.
Celebration of International Albinism Awareness Day aims to make the school and general community aware of the issues people with albinism may face, and to ensure that they are included in all aspects of Fijian life, whether it be at home, school, church, work, or in the community.