Albinism in Panama
Photographer: Bienvenido Velasco
Text by Maria M. Mur (EFE).- Yaili, Aydili and Ceily walk down the street huddled under a single umbrella, having forgotten their other one at home. The sun is fierce and their skin is nearly translucent. Although they are covered from the neck down and have applied plenty of sunscreen, the strength of the sun's ultraviolet (UV) radiation is very intense in Panama and penetrates the fabric of their clothing. They are known affectionately in their neighborhood, inhabited mainly by members of the Guna indigenous group, as the "blonde sisters."
Yaili, Aydili and Ceily are sisters. The first two are twins and all three are albinos. "Our mother was born very white and they thought she was an albino, but later she gradually became darker. Our great grandfather always told her she was going to have white children. Somehow he had that presentiment," the 18-year-old Ceily, the youngest of the three, told EFE. They are not the only members of their family with this hereditary condition, which is characterized by the partial or complete absence of pigment in the skin, hair and eyes. They also have an albino cousin and uncle. "We normally don't go out on the street at this time. We wait for the sun to go down," one of the twins says.
Their case may appear to be a genetic anomaly, but in fact that condition is quite common among members of this indigenous group. Experts say the rate of albinism within the Guna population is among the highest in the world, with roughly one in 150 people having that condition. By way of comparison, the rates in the United States and Mali (a West African nation where that condition is particularly prevalent) are one in 18,000 people and one in 1,000, respectively. French anthropologist Pascale Jeambrun has been studying this genetic condition for decades and says its prevalence among the Guna is particularly notable. "The albino gene has been present in the Americas since the Bering migration (when the hemisphere was populated) and there are 10 (indigenous) groups that have it, but in none of the others is it as strong as in this one," she said.
Endogamy and geographical isolation are the main explanations. The Guna, one of Panama’s seven indigenous groups, have a population of 60,000 (one in seven of whom are carriers of the gene) and are natives of an archipelago of small islands in the Caribbean waters off Panama. Many of the islets are more than five hours by boat from the coast and even the most heavily populated have no more than 1,000 inhabitants.
Although half of the population lives in Panama City, they continue to marry other Guna from their home islands. "When two gene-carrying parents get together, there's a 25 percent chance that the child will be albino, a 50 percent chance that he or she will be a gene carrier and a 25 percent chance that he or she will be healthy," Jeambrun, who recently traveled to Panama to continue her research, told EFE.
The type of albinism characteristic of the Guna (OCA 2) is the not the most serious of all because their bodies start producing a pigment called melanin as they get older, but people with this condition (especially those in tropical countries) still must exercise caution throughout their lives to avoid skin cancer. Besides skin lesions, albinos suffer from various eye problems such as nystagmus (rapid involuntary eye movement), strabismus (crossed or turned eye), photophobia (light sensitivity) and myopia (nearsightedness) and must regularly have their vision checked.
"My husband and I decided not to have more children because we can't risk having another albino," Yamilca Guerrero, head of the SOS Albinos Panama Foundation, which distributes sunscreen on the archipelago to people with this condition, told EFE. It's too expensive to care for them and we can't afford it," said Guerrero, the mother of a nearly seven-year-old albino girl who must take a series of precautions every day to avoid harm from the sun's rays.