Charlotte Schmitz’s Yo Soy Lo Que Soy: A group of people in Ecuador with Laron syndrome and are immune from cancer and diabetes (PHOTOS).

Living With a Rare Disorder That Causes Dwarfism and Immunity From Cancer

Living With a Rare Disorder That Causes Dwarfism and Immunity From Cancer

Behold
The Photo Blog
June 17 2015 12:06 PM

Living With a Rare Disorder That Causes Dwarfism and Immunity From Cancer

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Maria Luisa and Maria del Cisne, 27-year-old twins, lounge in their bedroom. They have just finished studying and are now looking for work in the same city. They have never lived apart.

Charlotte Schmitz

A few years ago, Charlotte Schmitz, a German photographer based in Istanbul, read about a 2011 study in the journal Science Translational Medicine about a group of people who were living with Laron syndrome, a rare form of dwarfism that also appeared to cause immunity to both diabetes and cancer. News of the study, developed over two decades by Jaime Guevara-Aguirre in a small village in the south of Ecuador where nearly one-third of people known to have Laron live, quickly spread around the world.

In an interview with ABC News in 2011, Guevara explained that he noticed that this area of Ecuador had a high rate of cancer, yet none of these patients were dying from it. “I’m talking about a total of 135 names that I can think of. None of them has ever died of cancer,” he said. “To me the possibility that that is a coincidence is almost none, because every single family in this case has at least one or two or three relatives that have died of cancer.”

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Maria Judith del Carmen, 75, lives with her two sisters in a small apartment in Piñas. The financial support she receives from the government is only $35 a month.

Charlotte Schmitz

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Maria José, 30, and her boyfriend, 20, in their apartment in Loja.

Charlotte Schmitz

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After years of disappointment, Alex, 15, has given up his dream of growing. “I am who I am, and I’m proud of it,” he says. His greatest dream of all, to become a famous clown, came a bit closer last year, when he took part in an Ecuador’s Got Talent competition.

Charlotte Schmitz

Schmitz, who lived in Ecuador as a university student, wanted to meet the people profiled. She went back in 2012, and through contacts with both her friends and her host family, was able to meet the villagers. Yet after being visited by countless journalists since the story broke, the villagers were somewhat reluctant to be interviewed. 

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Schmitz said that many of the villagers thought that, by participating in the study, they would receive medicine to help them grow to at least average height. Because of patent disputes, insurance, red tape, and an expensive price tag—the medicine, a human growth hormone, runs around $10,000 a month—the villagers were unable to receive it.

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Mariana de Jesus, 47, has never been to school and seldom leaves the house. She always carries her baby doll with her.

Charlotte Schmitz

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Corina, 28, and Maria José, 30, in the streets of Loja.

Charlotte Schmitz

One of the people who Schmitz met, Alex, said that he had given up his dream of growing. His new dream is to be a famous clown. That’s one of the reasons Schmitz named the series “Yo Soy Lo Que Soy,” or “I Am What I Am.” She found that many of the people she met were able to find new goals in life beyond growing taller. 

“He told me that he will more likely be famous if he is different from the others,” she wrote. “While practicing and working as a clown, he gained more self-confidence and became proud of who he is. He came to his dream closer two years ago, when he took part in Ecuador’s Got Talent competition—now everyone knows him in the country.”

Schmitz is done working on the series in Ecuador but has plans to visit Israel where a lot of people with Laron live and are currently working with doctors who have access to the medicines that could help them grow to normal height.

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Maria Judith del Carmen, 75, is the only one of nine siblings who suffers from Laron syndrome. She is 33 inches tall.

Charlotte Schmitz

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Victor, 23, in his apartment.

Charlotte Schmitz

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Yannick, 15, at school.

Charlotte Schmitz

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Freddy, 40, with his neighbor, 13, on the little street leading to their village Libertad.

Charlotte Schmitz

David Rosenberg is the editor of Slate’s Behold blog. He has worked as a photo editor for 15 years and is a tennis junkie. Follow him on Twitter.