WHAT WE DO TO HELP
On this website:
PWA refers to Person(s) With Albinism.
UTSS refers to Under The Same Sun.
Under The Same Sun (UTSS) Fund is a Canadian, Christian charity founded in 2008 by the current CEO, Peter Ash. UTSS is investing significantly within Tanzania to improve the lives of Persons With Albinism (PWA) by establishing a well staffed office and resource center there. Our primary focus is on advocacy and education as well as assisting PWA to access external information, education bursaries, health care and other community supports available to assist with their genetic condition.
Albinism is a rare, non-contagious, genetically inherited difference occurring in both genders regardless of ethnicity, in all countries of the world. BOTH the father and mother must carry the gene for it to be passed on even if they do not have albinism themselves. The condition results in a lack of pigmentation in the hair, skin and eyes, causing vulnerability to sun exposure and bright light. Almost all people with albinism are visually impaired, with the majority being classified as “legally blind”. While numbers vary, in North America and Europe it is estimated that 1 in every 20,000 people have some form of albinism. In Tanzania, and throughout East Africa, albinism is much more prevalent, with estimates of 1 in 1,400 people being affected. The term “person with albinism” (PWA) is preferred to the term “albino”. CLICK HERE
PERSONS WITH ALBINISM IN TANZANIA FACE SEVERAL MAJOR CHALLENGES:
- The horror of a rapidly growing industry in the sale of albino body parts.
This unimaginable evil is driven by the belief (in some areas of the country) that the body parts of PWA possess magical powers capable of bringing riches if used in potions produced by local witchdoctors (CLICK HERE for Albinism Related Attacks in Tanzania). Leaders in the albinism community believe that many of the attacks and killings remain undocumented and thus the numbers are likely much higher than our records show. While Tanzanian police first started documenting them in 2006, it is widely known that these witchcraft related assaults against PWA have been going on since time beyond memory. Reports also indicate that albino body parts are being exported outside of Tanzania. In one instance, a Tanzanian trader was caught traveling to the Democratic Republic of the Congo with the head of an infant with albinism in his possession. He told police that a businessman there was going to pay him for the head according to its weight. CLICK HERE
- Widespread social discrimination fueled by powerful myths
In sub Saharan Africa, there has been a long standing and widespread lack of public awareness about albinism. Powerful myths surround albinism, including these:
- PWA never die - They simply vanish - They are not human - They are ghosts.
- PWA are born to black women who have slept with a white man, or a European ghost. (Most women giving birth to a baby with albinism are abandoned by the father of the child. In most cases, neither parent knows that the father always carries the gene as well as the mother.)
- A PWA is a curse from the gods or from dead ancestors. As a result, touching a PWA will bring bad luck, sickness or even death.
- Lack of low vision aids
There is a considerable lack of glasses, magnifiers and specialized vision sensitive computer equipment in Tanzania. This results in tremendous difficulty completing educational programs, increasing the likelihood of dropping out and subsequent unemployment.
- Epidemic Rates of fatal skin cancer
The lack of, or reduced levels of, melanin in the skin of a PWA creates high risk for skin cancer due to sun exposure. Combine this with the profound lack of protective sunscreens, wide brimmed hats and proper clothing in Tanzania and you find epidemic rates of skin cancer in all ages. As a result, the average life expectancy for a PWA in Tanzania is 30 years, with only 2% living beyond 40 years. In countries and circumstances where adequate health care is provided and widely known, PWA have the same life expectancy as the general population.