…But more efforts are needed to fight ignorance about albinism
(This is a press release I researched and wrote for the Albinism Fellowship charity for the UK and Republic of Ireland. This is gaining coverage in the media around the UK this week).
Work by the United Nations (UN) to de-bunk myths about albinism has been welcomed by the Albinism Fellowship. But the charity says more still needs to be done to explain the unique challenges that face people living with albinism every day.
With Albinism Awareness Day on 13 June this year, the Albinism Fellowship, which represents people living with the condition in the UK and the Republic of Ireland, has praised a United Nations Office of the High Commissioner for Human Rights (OHCHR) website which explains the reality of albinism.
The website, launched on 6 May, is entitled ‘Not ghosts but human beings’ and the OHCHR believe the rare genetic condition is ‘profoundly misunderstood, socially and medically’.
Albinism is a genetically inherited group of conditions which leads to a reduction, or complete lack of pigment (colour) in the skin, eyes and hair of people with the condition. Approximately 3,000 people in the UK and Republic of Ireland live with it.
Mark Sanderson, Chair of the Albinism Fellowship, said: ‘We welcome the significant work of the United Nations in raising the profile of albinism on the global stage.
‘We want to ensure that our voices are heard on Albinism Awareness Day. The problems facing people with albinism in the UK and Republic of Ireland are certainly less severe than in other parts of the world – for instance, in Tanzania, Africa, there have been media reports of people with albinism being targeted against their will to be used in witchcraft.
‘But nonetheless, those living with the condition here often face a daily battle to make others understand about their often poor sight and sensitivity to the sun, as well as facing general ignorance and prejudice about their distinctive appearances and why they “look different” to other people. This must stop.’