Monday, April 18, 2011

Still processing

I am still processing my thoughts after the incredible week I spent in Guatemala with three impressive young women, Lindsey, Gillian and Ny.  Several themes have continued to resurface for me since our return.    

Go with the flow—this old adage played out in many ways in Guatemala, whether it was riding in a car and spending most of the time with your eyes closed, or in running late to every meeting that was scheduled, or providing impromptu genetic counseling to a family looking for information.   We really needed to be cat-like and land on our feet, ready to go in any direction.  This is certainly true about life in general, and will no doubt be true as we investigate other countries looking to provide genetic services to their citizens.

When in doubt, simplify—this too cropped up in Guatemala, and was a great lesson for the GenetAssist team.  We all become so comfortable talking in our scientific language, and we often had people we met look at us quizzically, not understanding our jargon.  It is important to be reminded that most people have little idea of what we are talking about.

Teamwork pays off—We made a very good team.  We understood the goals relatively well, though they changed a bit with each meeting.  We were quite respectful of one another, and yet our ability to laugh and enjoy the time there was not compromised by the seriousness of the tasks in front of us.  Everyone worked hard, and put in effort beyond anyone’s expectations, and we did so because we all wanted to do so.  This experience exemplifies the best kind of teamwork.  Successories, a company that provides inspirational and motivational products, has a poster on teamwork.  The caption is:  Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.


Lastly, the macadamia nut man, Lorenzo, had quite an impact on me.  Part of it is his wizened, “old person” perspective on the world, basically a tough guy with a big heart.  He is a contradiction of emotions. He longs for a simple life and reluctantly utilizes modern technology to make his farm work. He eats broccoli for breakfast even though he would rather have pancakes because he wants to stay healthily alive. He is disdainful of politicians (“the only thing on their minds is getting reelected”) and university academicians (“ they may be smart, but they have no common sense”). He is sad at the state the world is in, and it seems part of him wants to just run away but he doesn’t; instead, his response has been to build something that will make a difference in the world.

His passion is anything macadamia.  Oils for making women beautiful, the best pancakes I have ever had (not much of a pancake person, but these were so good…), decreasing the amount of carbon in the air.


His most poignant pearl for me related to his world view, that we are just small pieces of a much bigger picture, that we have to work at not getting caught up in the trivial, unimportant things that can sidetrack us, that it is foolish not to appreciate the beauty of what we have around us in this short life here on this planet.




Wednesday, April 13, 2011

The Origins of this Project

In the fall of 2010, Dr. Marta Julia Ruiz, a physician from Antigua Guatemala, made a presentation at Sarah Lawrence College about Abriendo Oportunidades, an ongoing project sponsored by several organizations, including the Population Council.  This visit was part of a larger US tour hosted by the United Nations Population Fund (UNFPA) to honor Dr Ruiz as the 2010 recipient of the organization’s humanitarian award for her efforts on behalf of young women in Guatemala. 
[http://www.youtube.com/watch?v=ZkT5L9KM09k]

Abriendo Oportunidades is a national program that provides “the most vulnerable indigenous Mayan girls and young women in Guatemala with personal and professional skills, mentorship and opportunities” to help break the poverty cycle and enable Guatemalan girls to reach their full potential. [http://www.youtube.com/watch?v=MwSFCtYZB7U

At the luncheon following her presentation, Dr. Ruiz and I (Caroline) had the opportunity to talk.  I asked her why she was interested in developing genetic services in Guatemala.  She told me a story of attending to a young woman whose newborn baby was born with many birth defects.  The baby died without having a diagnosis, and Dr. Ruiz described her anguish in not being able to provide the woman with information for future pregnancies.  This story is one of many such stories that occur regularly in Guatemala.  She invited our team to come to her country to assess the current state of genetic services and to meet the practitioners caring for individuals and families with genetic conditions. 

In the ensuing months, we received a small anonymous grant to cover the cost of our trip.  Once we gave her the timeframe for our trip, she made all of the appointments with the healthcare providers we subsequently met while we were there. 

And our pilot project was born…

Friday, April 1, 2011

Corn

Corn is the main staple in Central America. It is found in tortillas, which we ate in abundance in Guatemala. Some native women eat 15 or more corn tortillas per day. We learned that a natural fungus that clings to corn produces a toxin called fumonisin that is partially responsible for the high rates of open neural tube defects and cleft lips/palates in Central America. Research suggests that fumonisin interferes with the body's ability to absorb folic acid, starving the developing embryo of its protection. One study in the Rio Grande Valley in the early 1990s, demonstrated in humans the link between tortilla consumption, fumonisin, and neural tube defects. According to this report, "pregnant women who ate 300-400 tortillas per month during the first trimester had more than twice the risk of giving birth to babies with neural tube defects than did women who ate fewer than 100 tortillias" - Environmental News Network, Study suggests bad corn caused birth defects in the Rio Grande Valley, February 10, 2006. Several other studies have reported a similar connection.

Dr. Asensio tells his patients that six months before pregnancy they should decrease their corn intake and increase their folic acid. He realizes this is a near impossibility for families living on $2/day who have no other food options.