Mahgeswari, the 17-year-old daughter of CKD patient, Ventkataiah, poses for a portrait outside her family home in the village of Kota.
Donna Lakshmi talks with other women and victims of CKD. She was widowed less than one year ago after her husband died of CKD, chronic kidney disease. And in her village there are more than 126 widows from this disease, out of a total population of 3200 people.
V. Narasaiah, 50, sits at home in his village of Anikepalli. He was a rice farmer for 35 years and then went into hauling before getting sick with CKDnT (chronic kidney disease of non-traditional causes) and now being unable to work.
Chronic kidney disease, or CKD, is a scourge of the rich world generally caused by diabetes, high blood pressure or obesity. An alternative form of CKD, however, is finding its way into the developing world. Known as chronic kidney disease of non-traditional causes, or CKDnT, victims are mainly agricultural workers, low wage earners and rural folk. This growing epidemic is thought to be occupational and environmental, not lifestyle caused, and it’s creating an alarming new medical problem that doctors around the world are barely aware of, have not figured out the cause of or found a way to prevent.
In Central America alone, more than 20,000 people have died or contracted this illness over the past two decades. Many similar cases in other countries like India, Sri Lanka, Costa Rica, and more have highlighted the fact that this is a global epidemic. I recently traveled to southeast India with a team of researchers to the states of Andhra Pradesh and Tamil Nadu, to investigate if this illness is occurring there. Our findings indicated that not only does the illness exist, but also that it may go largely undetected. And often by the time it is diagnosed in a patient, it’s too late. Sufferers of the disease face a shortened life, are unable to work or support their families and are surviving only on dialysis.
While the Indian government and private doctors, clinics and hospitals are trying to expand the number and geographic scope of dialysis centers in the affected areas, it’s often inadequate. More troubling is the economic impact and stigma associated with this disease, often rendering a family helpless while trying to keep their loved one, often a man and the breadwinner, alive at all costs. We witnessed their children’s dreams of education dashed with the burdens of paying for dialysis, in turn often forcing them into work to support the family.
This series of images is not only meant to raise awareness but is also a call to arms for researchers, doctors and scientists around the world to come together and find the cause, develop cures and find prevention measures for this devastating disease. To combat this global epidemic, action and research are required on a global level.
A dog walks on a rooftop near Süleymaniye Mosque in Istanbul, March 2015.
Keles Kasim, left, cleaning up after lunch with his friends, February 2015.
Syrian kids play tug-of-war near the Süleymaniye Mosque in Istanbul, Spring 2015.
I’m sitting in a 32-square-meter apartment in Istanbul that has no toilet or shower. The curtains reach from the ceiling to the floor and the hue-less walls are full of spots where the paint has chipped. The air is moist.
The Kasim family has gathered together for dinner. Brothers and sisters. Wives and kids.
Scrambled eggs, white bread, tomatoes, and tea are served. Men eat first while children and women wait for their turn. Cigarette smoke floats in the air. A TV in the corner of a small room, along with phone calls from relatives still in Syria, tell a hopeless story of the war. The kids are playing: simple things make them laugh easily.
They are Syrian Kurds from the countryside around the Syrian cities of Aleppo and Homs. Their journey began when the civil war in the country escalated. As the War came too close, the Kasim family left their home, a small olive farm near Aleppo, and headed on foot to the Turkish border in February 2013.
They crossed the border near Aksakale with the help of smugglers who cut a hole in the border fence with wire cutters. The crossing itself was about 400 liras (about $150 USD) for the family. Accompanied by a smuggler, they crossed the border in the darkness. All they carried with them were their children and some cash. On the Turkish side of the border, Keles called his siblings at 9:00 a.m. to come pick them up by car. The last thing that Keles remembers from the journey is the sight of a garden glistening in the sunrise.
Süleymaniye is one of the historical districts in Istanbul, Turkey. It’s patrolled by packs of street dogs that bark at each other to protect their territories. Once, this neighborhood was a perfect place to live. Today, it’s abandoned and in ruins. New inhabitants have settled — new inhabitants like the Kasim family. The air fills with prayer calls from minarets five times a day. Somewhere in the distance, you can hear the sounds of someone cooking and kids playing. According to the U.N., the conflict in Syria has killed over 250,000, and the U.N. estimates that 12 million people are internally displaced. Turkey opened its border to Syrian refugees, and 2.7 million have taken asylum there. While only a tenth of Syrians in Turkey live in camps, the rest have settled in cities. Istanbul now houses about 800,000 Syrian exiles, according to city officials.
Knowing little Turkish and lacking official documents, they have had a hard time finding work. According to the Washington Institute, Syrians who are living illegally in Turkey and are not registered as refugees pose unique challenges for the job market. They typically use their existing savings to rent small apartments, and they seek informal work opportunities in clothing factories, clothing stores, restaurants, and construction and agriculture sites. If these Syrians are caught by the police, they are sent to refugee camps.
As illegal workers, they earn below the minimum wage, reportedly around $250 to $300 USD monthly, which is just enough to cover their living expenses. Some salvage a bit extra to send back to their families in Syria. Reports have surfaced of Turkish bosses refusing to pay their Syrian employees and of the Syrians not reporting these abuses for fear of being sent to the camps. All Syrians are entitled to The Disaster and Emergency Management Presidency of Turkey card by the government, which all but guarantees them free healthcare and education for their children.
Kind-hearted locals bring food and clothes to refugees, helping Syrian refugees to survive. But life stands still.
Regardless of all the despair, guests with good intentions are welcomed and will be offered tea, food and cigarettes. From time to time, the air is filled with jokes and laughter.
Esa Ylijaasko spent two years documenting the life of a Syrian refugee community in the Süleymaniye neighbourhood in Istanbul, Turkey from 2013 to 2015.
Valerio Fonseca Melo, 65, 1.2m. He was a farmer and soccer player. Today, he is retired. He is a close friend of Mariana and Joseane. They met in the bank and have been friends since then.
Joaldo, 26, 1.35m and his girlfriend. They live in Itabaianinha. Since the 1990s, doctors, led by Dr. Manuel Herminio Aguiar-Oliveira, have treated about twenty children suffering from this genetic mutation. The treatment is free and guarantees a normal height, according to the doctor, but some still reject it. Joaldo was treated for four years. He took shots every day, and while he did grow, he complains that the process was painful.
Beatriz Nascimento da Cruz, 75, owns a popular market in Itabaianinha where she sells sweets, ice cream, water, etc. Her brother Joao Nascimento da Cruz, 71, had owned a bar before retiring. They are both single. Beatriz is a virgin and never had a boyfriend. She says that at one time, the dwarves did not marry and she continues that tradition to this day.
Known as “the city of the Midgets”, Itabaianinha is a city of 30,000 inhabitants, in the state of Sergipe, northeast of Brazil. With about 25 times more than the national average, it is considered the city with the largest population of dwarves in the world.
There is no official census, but the calculation is between 70 and 150 dwarves.
Achondroplasia is the most common form of dwarfism, commonly with long torso and short legs. But the cause of short stature in Itabaianinha is a rare genetic mutation that affects the growth hormone and is transmitted from father to son.
There is a government program to inject growth hormones in people of the city. Since the 1990s, doctors, led by Dr. Manuel Herminio Aguiar-Oliveira, treated about twenty children suffering from the genetic mutation. The treatment is free and guarantees a normal height, according to the doctor, but some still reject it. “When they reach 1.40 or 1.50m, they want to leave treatment. They are not ashamed to be small, this is common, they are happy, the city is like that.”
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Ron Haviv for the Newest Americans, featured on The Atlantic
Marisol Conde-Hernandez is a law student at Rutgers University—Newark. By going public about her immigration status, Conde-Hernandez became one of the leaders of undocumented youth in New Jersey and is the co-founder of the NJ DREAM Act Coalition. In the short film, Conde-Hernandez talks about her journey—how her family crossed through the desert, and upon arrival, they became archetypal hard-working immigrants. “I felt protected because I was such a model student. Would they have cared if I had not been academically inclined?” she asks in the film. “My inclination is to say no.”
“American Sueño: Meet Marisol“ is the first of a three-part series by Ron Haviv and Talking Eyes Media for Newest Americans. This film appears in the first issue of Newest Americans, a collaboration between Rutgers University-Newark, Talking Eyes, and VII centered around America's changing demographics. This short film is part of an ongoing series on The Atlantic from Talking Eyes Media about movement, location, and identity called State of Migration.
Gibraltar is a British overseas territory located at the southern tip of the Iberian peninsula and connected to it through Spain. The so-called Brexit referendum will be held in June and the UK will vote on whether it wants to leave the EU or remain a member. Gibraltarians are wary of the possible exit of the United Kingdom from the European Union because Spain may start a campaign claiming Gibraltar’s territory. In the worst-case scenario, Spanish authorities might close the border in order to stop the free movement of people and leave the Gibraltarians confined to their small piece of land which is the southernmost part of Europe.
Ali Arkady / VII Mentor Program, featured on CNN.com
Ali Arkady started his dangerous journey to Baghdad, Iraq, in July. He had one goal: spend close to a year with a group of Iraq's orphans, a story he wanted the world to hear about. Thousands of children have lost their parents in Iraq's recent bloody past, but many of them are cared for by extended family. These children are the forgotten ones, with no family to take them in. Arkady packed his gear and spent nine months with 33 children at a safe house for some of Iraq's most neglected. "They are a bunch of children, very vulnerable and very sensitive to their outside world," Arkady said. "Since then, I think of them every day and I wish them luck."
In honor of World Press Freedom Day, we asked VII's Facebook, Instagram and Twitter followers to submit questions about press freedom for the third installment of #7withVII. Click here to read 7 answers from VII members Ashley Gilbertson, Ron Haviv, Ed Kashi, Gary Knight, Christopher Morris, Franco Pagetti, and John Stanmeyer, plus special contributions by VII Mentor Program photographers Arnau Bach, Poulomi Basu and Linda Bournane Engelberth, and an introduction by Neal Jackson, Chairman Emeritus of VII.
What does press freedom mean to you?
“Having been a working journalist since the early ‘80’s, I’ve spent my career dealing with governments and institutions that are out to control their message. This is where truly good journalists flourish, where they look beyond the obvious. While pushing the accepted boundaries that are in place. The freedom of the press is vital for all societies. Sadly most of the public doesn’t see it this way.” — Christopher Morris
Mi Shixiu cradles He Quangui's head as he's struggling to breathe. . .He eventually recovers his breath. But in the wee hours of the next morning, he tried to kill himself to end the suffering. Photo by Sim Chi Yin / VII.
Sim Chi Yinreceived the Hong Kong Journalists Association's 20th Human Rights Press Awards Photography Grand Prize for her project “Dying to Breathe.” Her short film from this project also placed as a finalist in the 59th CINE Golden Eagle Awards.
Ed Kashiwrote about consequences of a photojournalistic life in a blog post that was published on Time. "I have spent a lifetime trying to become invisible. As a documentarian my goal is to disappear, to observe without disturbing the world I'm trying to capture. It is obviously impossible to actually achieve this, but that hasn’t stopped me from trying. Disappearing into the background is an effective strategy to bear witness to moments that would otherwise be inaccessible. Candid intimacy is the term I've used to describe my work, and my vanishing into nothingness is the imperative. But what happens when you become so expert at this that you begin to disappear in your own life?"
The Sydney Morning HeraldreviewedRon Haviv’s exhibition The Lost Rolls, which had been on view at Head On 2016. "The Lost Rolls could stand as a summary of so many of the themes of this year's festival. It has significant social content, a sense of history, a private aspect, a precise formal dimension, and an outlandish "artistic" aura caused almost entirely by errant chemicals. What more could one ask of a photograph?"
Leica’s M Magazine published Tomas van Houtryve’s "Mine Eats City" series in their Spring 2016 issue and interviewed him about this work in the LFI blog. The series is about a city in danger of disappearing. High in the Andes mountains, a mine that once supplied the Spanish Crown with silver is now poisoning the 70,000 inhabitants of Cerro de Pasco, eating away at the very earth beneath their feet.
Sarker Protickspoke to The Guardian about the photos of his grandparents that are included in Sophie Howarth and Stephen McLaren's new book Family Photography Now. “As they got older and became confined mostly to their apartment, I visited them often. But the pace of our lives had become so different, and sometimes I struggled to know what to talk about. I started making photographs as a different way to spend time with them. They loved it. So did I. The experience of photography gave us much more than just photographs.”
Linda Bournane Engelberth, of the VII Mentor Program, received a 2-year artist grand from the Norwegian Art Council.
The 2016 Pierre &
Alexandra Boulat Award
This award was established by the Pierre and Alexandra Boulat Association to promote the creation of documentary work with a social purpose. The winner will receive an €8,000 endowment to help carry out an original reporting project. Applications must be received by June 17, 2016. To learn how to apply, click here.
By Danny Wilcox Frazier
"The photographs for #outinthesticks and this book are pieces of my life when not on the road for project and assignment work. Most are shot with an iPhone, and come from drives down gravel roads, hunting with my son, or from following dark smoke to a controlled burn after a trail ride. They are for family, friends and colleagues. They are my notes at the end of a day, my hellos and goodbyes. Those who know me well know this is the only way I can communicate without screwing it all up. In the book are 10 personal notes about life here in Iowa...” — Danny Wilcox Frazier
#outinthesticks by Danny Wilcox Frazier is a guest artist title from 10(X) Editions. Hand-bound, hand-stamped, signed and numbered, this 5x7 inch book features 10 images from Danny's Instagram feed.
By Sarker Protick & Katrin Koenning
Astres Noirs is the debut book for both Katrin Koenning and Sarker Protick, artists who live thousands of miles apart whose peculiar photographic wanderings create a hauntingly beautiful dialogue. This book presents photographs taken on mobile phone cameras, devices used to capture their everyday in an impulsive and almost obsessional way, documenting life from their doorsteps to far afield.
Their photographs capture the commonplace such as water stains on asphalt, dust clouds and rays of light, and transform these into mesmerizing frames – elusive fragments that evoke an imaginary creature, a milky way, a phosphorescent silhouette…
Presented together, their combined voices lead us on a journey into unexplored territory, somewhere between the everyday and paranormal, between night and day. Amongst enveloping darkness, lightness is revealed, dazzling and miraculously caught by discerning eyes.
The first 200 pre-orders come with a 15 x 15 cm C-print by Katrin Koenning or Sarker Protick.