Tag Archive | nicaragua

Mystery Kidney Disease in Central America

This week my radio story was broadcast on Public Radio International’s “The World.” This was an effort of a reporting project from The Center for Public Integrity and the International Consortium of Investigative Journalists.

Please read the excellent article written by Sasha Chavkin and Ronnie Greene for a more in-depth investigation of the story.

The following is an excerpt from the radio piece:

A mysterious epidemic is sweeping Central America – it’s the second biggest cause of death among men in El Salvador, and in Nicaragua it’s a bigger killer of men than HIV and diabetes combined.

It’s unexplained but the latest theory is that the victims are literally working themselves to death.

In the western lowlands of Nicaragua, in a region of vast sugarcane fields, sits the tiny community of La Isla. The small houses are a patchwork of concrete and wood. Pieces of cloth serve as doors.

Maudiel Martinez emerges from his house. He’s pale, and his cheekbones protrude from his face. He hunches over like an old man – but he is only 19-years-old.

“The way this sickness is – you see me now, but in a month I could be gone. It can take you down all of a sudden,” he said.

The story was also published here:

PBS NewsHour online

http://www.pbs.org/newshour/updates/globalhealth/july-dec11/kidney_12-13.html

BBC News in English and Spanish

http://www.bbc.co.uk/news/magazine-16007129

http://www.bbc.co.uk/mundo/noticias/2011/12/111213_enfermedad_renal_centroamerica_men.shtml

Finding a reason to carry on

I spent the night in La Isla with Maudiel and his family. If you remember from my last post, Maudiel is very, very ill with Chronic Kidney Disease. He is 19-years-old and has lost numerous family members to this disease.

He looks and acts like one of those people who wouldn’t hurt a fly. He wouldn’t. We arrive for the interview and he comes out of his house with a smile that betrays the exhaustion he is feeling and tries to hide as he carries over chairs for us to sit on.

Can you imagine what it must feel like to know you could die any day when you are only 19? Maybe some of you can. I can’t. I was thinking about what it must feel like to fight back this fear everyday. The anxiety shows in his eyes. However his worries are more focused on his family. Everyday he tells me he feels anxious because he has to stay home and wait. He is too sick to weak to work and help his family. His eyes fill with tears and he looks away when he tells me, “[I am here today, you see me right now, but tomorrow I could be gone.]”

Yet my time spent with this family was full of welcome and affection. Maudiel’s mother Tina, hugged me so tight. They all went out of their way to make sure I was comfortable and had enough to eat when they live day to day with barely enough to get by.

Their photo albums are notebooks with pictures stuck between the pages. So many of the photos show funerals, caskets holding loved ones who have died.

Just to explain a little bit: when someone has CKD (Chronic Kidney Disease) their kidneys can no longer filter waste from their bodies. This creates an insufficiency of creatine in the body. Creatine is produced in the kidneys and gives the body energy. That is why when people are ill with the disease they fell extremely weak.

We woke up this morning to a tremendous downpour. There is a hurricane in the pacific and it brought down heavy rains all day in Nicaragua. Small rivers formed in the yard, at times the rain was coming down so hard you could barely hear. Tina, Maudiel’s mother didn’t have to work this morning because of the storm. But she worked all day. She made us breakfast, a typical Nicaraguan dish called Pinto de Gallo (rice and beans blended together), she washed the ropa by hand outside under a tin roof, her daughter Tanya helped her rinse the maiz to make tortillas. Her sons carried big buckets of dirt into the outdoor kitchen to fill the puddles in the dirt floor made by the rain. Chickens and starving dogs ran in and out of the outdoor kitchen and the house. In between all of the tasks that had to be done the kids played games, showed me photo albums, asked me for words in English and joked with one another. Maudiel stayed inside most of the time, swinging in the hammock, talking with his siblings. He told me he was happy today because no one had to go to work. He wasn’t alone in the house and the whole family could be together.

Maudiel is sick. His father and grandfather died of this disease, his uncles. Three of his brothers are sick and probably one of his sisters. Two of the four girls work cutting sugarcane as well. Tina tells me, this is work for men but they have no choice. Both of their husbands are too sick to work. One of Tina’s daughters committed suicide when she was 15. I visited a family a few houses down who had just lost their father a few days before to the disease.

I had to remind myself that I should not allow myself to be sad when Maudiel is smiling even though death is all around him and inside of him. So I drank my coffee and ate my Gallo Pinto with Tina and I talked with Maudiel about what it was like to fly in planes. I listened as his younger sister described family memories as she pulled out album after album, pointing to another family member telling me “Y tambien se murio por la Creatina.” (And he also died of the Creatine).

We’re not looking for pity…maybe a little understanding

I arrived in León, Nicaragua. Rainy season here too, rivers of water flooded the streets and people waded through another day. It rains everyday in El Salvador too. I was just telling some friends that I am accustomed to worrying about my clothes drying on the line. It is part of life here to suddenly have to run home, thinking “la ropa, la ropa!”

Tomorrow I go, by motorbike with my equipment (I’ll let you know how that goes) to Chichigalpa and the community of La Isla. I am reporting on a story about the Chronic Kidney Disease epidemic affecting this region. This is also a serious problem in El Salvador and I have been doing interviews there as well.

But tomorrow I meet Maudiel, a young man of 19-years-old, dying of a type of kidney disease afflicting sugarcane workers. Doctors and scientists know this strain of the disease is different from the more common form caused by Diabetes and Hypertension.  The Salvadoran government has stepped up to the plate and is funding research about the disease.

Boston University was the first outside organization to be allowed by a sugar company here in Nicaragua to conduct a study.

http://ndt.oxfordjournals.org/content/early/2010/07/08/ndt.gfq385.full.pdf

The mystery remains though. Meanwhile Maudiel and his younger brother are both gravely ill with the disease. Maudiel’s father, grandfather and uncle died of the disease. After he got sick he continued to work under the identity of a woman, because he had no other option to support his family. He is not too sick to work.

Families like Maudiel’s have no money to pay for medical care and once the sugar companies let them go when they are too sick to work, they no longer have access to medical care.  I know I am going to learn so much more about this disease and the people it is affecting over the next few days. I will share what I learn. My radio piece will be broadcast on PRI’s “The World.” I have been collaborating with another journalist, Sasha Chavkin, and he will be writing a series of articles. He has been studying this epidemic for a couple of years.

This evening I settled at the Isla Foundation where I will be staying. This foundation was founded in 2008. It was formed to help educate the world community about this disease in hopes of finding a solution.

http://www.laislafoundation.org/La_Isla/Welcome.html

I took a walk by myself in León in search of some food, and because I figured it may be my only chance to be a little bit of a tourist. Of course, living in Central America, no matter what I am doing or where I am, I take in everything with the eyes of a foreigner. Everything is interesting and new.

I feel like everywhere I go there is a celebration. I have been an on-looker at more than one carnival or parade in El Salvador. Here León I encountered one as well, celebrating the medio ambiente (environment) of Nicaragua. Groups were dressed as animals, plants and other earthly creations. I had a similar experience one afternoon in Usulútan, El Salvador. I woke up from a nap to the sound of cymbals and drums. I walked outside to a procession of cars carrying little girls dressed as princesses and school band playing. There’s always a reason to celebrate and I realize more and more that people in Central America know this.

While I was eating my Chilaquiles for dinner, I was thinking. As I like to do from time to time.

I constantly find myself in humbled by the beauty of the land and the people on my journey thus far in Central America. Yet I am also always aware of the contrast to this beauty that is the extreme poverty, disease and violence that afflicts so many people in this region of the world. But make no mistake; they don’t want pity. From my experience so far, I see people finding strength and a reason to smile through the conflict. It reminds me to shut my mouth and keep moving forward. Maybe if people in the U.S., for example, knew more about the resiliency and richness of these cultures, they wouldn’t be marginalized in the news as dangerous, tragic situations.  “Oh those poor people.” Or “How do they live like that?” Guess what? Nothing is ever just one way, one side. I have seen the positive and inspirational characteristics of the cultures here. They also have a lot to be grateful for and they show it. I know this is true for many regions of our world, from where it seems we only hear the ugly. I’m not saying their struggles are insignificant by any means. It is sad, it is depressing and sickening what some people in this world have to fight through each day. We are just missing a lot only concentrating on the dark side. They are not only their sickness, their poverty, their conflict. Maybe I am rambling nonsense. That’s part of who I am too.

Here are some pictures from my evening stroll. More from Nicaragua later…