Guatemalans Suffer From Fatal Skin Cancer
Genetic Skin Disorder Makes the Sun Deadly for Many Children
Mar 24, 2009
In a remote Guatemalan village, 12 hours by 4-wheel drive from Guatemala City, an alarming number of children are born with the genetic condition known as XP. While elsewhere in the world, only one child in a million is born with XP, in this small village there are currently 26 cases, and many others have already died because of the condition.
Rare Genetic Condition Leaves Children Defenseless Against the Sun
Xeroderma pigmentosum (XP) is a rare genetic condition which makes a person’s DNA unable to repair damage from the sun’s UV rays. Children born with this condition will freckle after just a few minutes in the sun and develop malignant squamous cell and melanoma cancers if they continue to be exposed to the sun.
Sun's Effects are Deadly
The sun is strong in the Guatemalan mountains, and the children must keep themselves constantly sheltered from it. Generations of villagers have lived in ignorance about the disease, at one point even wondering if the village was cursed. No one suspected that the sun's ultraviolet rays were causing these terrible outbreaks of cancerous skin tumors. By the time medical experts finally diagnosed the problem as XP, it was too late for many. Those who have survived are covered with tumors, disfigured and blinded, and suffering from painful infections.
Mayan Village Overwhelmed with XP Patients
In Barillas, a small, remote village in the Mayan region of Guatemala, dozens of children have numerous, extensively metastasized cancerous tumors. A cancerous area that would be considered highly dangerous and surgically removed immediately in the United States is just a fraction of the skin cancers that can appear on the face of a person with XP. Disfigurement, blindness and death are often the result if the cancers are not removed in time. According to the XP Family Support Group, without intervention, by the age of 12, children in this village with XP "are usually dead from metastatic, disfiguring facial tumors and infection."
U.S. Doctors Make Historic Visit to Barillas
Help has recently arrived in the form of a team of surgeons from the U.S., who made a historic journey as the first U.S.-based doctors to visit the village and treat the patients with XP. In March of 2008, they volunteered their time to perform surgical reconstruction on the faces of ten patients. Lacking all but the most primitive of medical equipment and supplies, they used what few resources they had and hoped for the best.
Bari Cunningham, M.D., was among them. In the documentary Hidden From Light, filmed on their visit, she describes one of the patients they operated on as "the most intense surgical case I've ever encountered." Using skin grafts from abdominal skin, several of the patients with severely advanced tumors had almost their entire faces surgically repaired.
Documentary on the Subject is in the Works
Documentarian Brian Knappenberger, who accompanied the doctors and made the film, says he was there "Recording the actions of a handful of incredible doctors - people who gave up their comfortable lives for a series of unknowns...Some moments in the film are tough to watch because a few of the kids were in a very serious state, but the final result was astounding." The film is currently in post-production and will be shown at festivals later this year.
More Aid is Needed
The XP Family Support Group needs contributions from caring citizens in order to enable doctors to return to Barilla yearly and alleviate these children's suffering on an ongoing basis. There are many ways to support their efforts, and more information can be found on their website.
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