Hats on for skin Health – a programme for the support of patients with albinism
Although Albinism is rare in most countries of the world (1 in 17000) in Africa it is much more common. For instance it is estimated that 1 in 1400 persons in Tanzania has albinism, where it is estimated there are as many as 150000 persons affected. These individuals lack the mechanisms to make melanin, the pigment that produces the brown skin and eye colour and protects against sun burn and irreversible sun damage. As a result persons affected with albinism are prone to frequent sun burn and usually have their first skin cancer by the age of 10. Also they have impaired sight so find it difficult to study easily and find suitable employment, leaving them destined to work as peasant farmers out in the hot and damaging tropical sun. Because of social stigma few have the education opportunities to allow them to achieve an occupation out of the sun.
The purpose of the programme is to
Prevent early death from skin cancer by treating patients early and close to home through community based programmes
Develop educational tools to educate susceptible individuals to protect themselves and to inform the society at large about the medical and social implications of albinism
Empower patients and their families to seek appropriate advice and care at the earliest opportunity
To inform and educate both the local and international community of the problems facing albinos of the extent of problem and the risk of social isolation and stigmatization
To produce cost effective sun protective creams
To advise and train patients for indoor occupations such as clothing manufacture
Through the flagship programme initiated at the Regional Dermatology Training Centre in Moshi, Tanzania it has become possible to reach patients in 20 African countries where albinism is common. The IFD programme for assisting patients with albinism is named “Hats on for Skin Health”.
The programme started as an initiative to provide sun protection and skin screening for patients in surrounding districts was enlarged in collaboration with Stiefel/GSK to provide protective clothing. With the completion of a new Centre for Albinism on the RDTC site it will be possible to expand activities into more areas of Tanzania and other parts of sub-Saharan Africa