Raising Awareness about Albinism in Fiji
A staggering one in 700 people in Fiji live with albinism, a normally rare condition. This is one of the highest rates in the world. For those living with albinism there are many challenges that are faced on a daily basis, especially on these tropical islands where there is a limited education surrounding this skin condition. It is common for people to believe albinism is contagious and therefore those living with this ailment are often ostracised by society.
Loreto Sister Helen Maguire has been attending workshops, the first of their kind in Fiji, and volunteering her time with the not-for-profit organisation Healthy Skin Fij run by a remarkable Australian Dermatologist, Dr. Margot Whitfeld. Healthy Skin Fiji is on a mission to educate people about how to live a happy and healthy life with Albinism. Helen tells us of her experience to date:
Towards the end of last year I was presented with the wonderful opportunity to join Dermatologist Dr. Margot Whitfeld and her team for a workshop in Fiji. Margot has been visiting Fiji for over a decade where she has set up clinics, trained doctors and health care workers and provided care to patients at the Twomey Tamavua Hospital in Suva. During this time Margot identified a high incidence of Albinism amongst the Fijian population and this led her to develop a keen interest in the condition and a concern about related skin cancers.
Albinism is an inherited condition which causes lack of pigmentation in the skin, eyes and hair. It causes a very high risk of skin cancers and usually poor vision. It can also cause stigma and isolation due to lack of understanding. People with albinism are of normal intelligence and if their low vision problems are addressed and they look after their skin they can lead fully active and productive lives.
In November 2014 a workshop was held at the Fiji School for the Blind for health care workers, doctors, parents and teachers. The program involved a series of lectures regarding the genetic causes of albinism, the varying ways in which the condition manifests and the measures that can be taken to improve the health and educational opportunities for children with albinism.
As a result of this successful workshop we returned to Fiji in August of this year to conduct the first Fiji Albinism Awareness Symposium. The goal of this symposium was to use the knowledge and experience of practitioners from health, education and special needs sectors to raise awareness around the needs of people with albinism and to increase public awareness. Representatives from every Government Sector were present which speaks for itself.
The symposium was officially opened by the Minister for Health and Medical Services, Mr. Jone Usamate who said that the discussions and information gathered would enable the Fijian Government to review and analyse albinism in Fiji and improve the health, education and quality of life for those members of the community with the condition.
I am indeed privileged to be a part of this team. In only 9 months so much has been achieved and already significant changes are occurring. The Fijian Islands are spread far and wide. Identifying every person with albinism will be a slow process, but one that has begun. Our ongoing support and education will hopefully make a difference for every child born with this condition.
To find out more about Healthy Skin Fiji or to donate please visit: www.healthyskinfiji.com.au