Tanzania is a country in Africa close to the equator therefore with a strong Ultraviolet background.
Like anywhere in the world, there are people suffering from albinism (Oculo-cutaneous albinism, OCA)
OCA is a complex genetic disorder (link) which presents on the skin but which can also have other manifestations (nystagmus, blindness):
-It is inherited in an autosomal recessive mode 1 in 20000 individuals of all races:
-if the mother and father carry the gene, there is a 25% chance that a pregnancy will give albinism.
-Therefore normally pigmented individuals may carry the gene
In OCA, there is an absence of functional tyrosinase to convert precursors into melanin. As a consequence of this the skin is white (Phototype I) and easily damaged:
-acutely with sunburns
-chronically with premature photo aging and an increased incidence of melanomas and non-melanoma skin cancers (Basal Cell Carcinomas, Squamous Cell Carcinomas)
Why did Peter Ash go to Tanzania ?
-In 2008, a documentary was shown on the BBC where a journalist undercover went to see a witchdoctor. He acted as a wealthy elite and told the witchdoctor that she wanted to be re-elected. She was told that a potion had to be made with body parts belonging to a someone with OCA. (note that is is more humanizing than to say “albino”. (Click HERE to view related documentaries)
-He was shocked and left everything accepting the fact that he could be attacked from the first night onwards
-He realized upon arrival that nothing was known about OCA. They were considered as abnormal, stupid ghosts who were immortal. There was no structure to handle them and they were stigmatized…something needed to be urgently done from scratch.
Stigmatization of individuals with OCA in Tanzania
In most countries, they are considered negatively such as in Tanzania:
-they are in constant fear of being rejected by their own social network. They do not go to school because or their visual impairment and they are often considered as stupid.
-They are mystified in Tanzania and considered as ghosts and therefore immortal. They are “hunted” because their amputated limbs are used in potions to make them rich and powerful (also murder, rape, mutiliation, grave robberies, trafficking of organs) – grave human rights violations (extremely dishearting pictures of mutilated bodies which cannot be shown here: babies and children included). 376 attacks are recorded in 25 African countries…most are unknown (date of publication of this article)
Offer: “4 limbs + genital parts + ears + tongue + nose fetch for around 75000 dollars
–How to obtain the potion: the wealthy elite goes to the witch doctor who uses hired hands (paid assassins) to murder victim, then they prepare and deliver the package. Interestingly, the courts often do not identify the consumer, only the witch doctor or the hired hands go to jail.
Note: in almost all societies, they are negatively viewed. But In Panama they are revered, Nevertheless whether positive or negative, people with albinism are stigmatized everywhere in the world. It doesn’t help that, they are depicted as evil in movies, click HERE to read more.
Having Albinism in Tanzania
-Short life expectancy because of photodamage: 10% survive to age 30%, 2% survive to age 40 years…although preventive and therapeutic measures are unavailable. All it requires is that it is managed: prevention of sun exposure and treatment of early skin cancers
Correcting this
…through a practical humanitarian project on Albinism in Tanzania: how this project has been a success and the involvement of dermatologists, international organizations and patient groups.
1. Advocation to Human Rights of the United Nations (UN) in Geneva, Switzerland
-between 2013 and 2015, 4 resolutions were made which is quite (a speedy achievement for the United Nations Human); here are 2 of them*
–International Albinism Awareness Day to be celebrated on June 13th
-the UN agreed to appoint a full-time expert documentation of human rights violations in july 2013 Violations will de documented and countries will be held accountable.
2. What is now being done in Tanzania
-public awareness campaigns (schoolteachers, radioadvertizing)
-education of the children (cost is about USD1300 per year)…remember they have no parents
More information: www.underthesamesun.com
Under the Same Sun–A Tanzanian Success Story. International Dermatology Patient Organization Conference (IDPOC). World Congress of Dermatology 2015 – Vancouver, Canada
+41 22 738 18 48