Combating Childhood Diabetes in Bolivia
It is amazing when you can look back and pinpoint a moment, a decision, or an idea that changes everything for the moments that follow. In December of 2008, I traveled to Bolivia with the organization AYUDA (American Youth Understanding Diabetes Abroad), a nonprofit organization whose mission is to empower youth to serve as agents of change in diabetes communities around the world. The mission of AYUDA is two-fold: to empower volunteers as powerful agents of social change, and to educate and inspire children in Latin America with Type 1 Diabetes to manage their health and break the sad cycle of early preventable complications and death due to their condition.
What began as a two-week diabetes education and youth empowerment program eventually turned into what I now look back on as my moment. Inspired by the life transformations I witnessed during the weeks of our program, I too decided to transform my life and remain in Bolivia dedicating myself to the success of future diabetes education camps and to the young people I met. One by one I said goodbye to the team that I had traveled down with, and was admittedly more than a little nervous skipping my own flight home.
During the week of AYUDA’s diabetes education camping program, Campo Amigo, I was fortunate enough to meet and work with Dr. Patricia Blanco. Dr. Blanco is a M.D. and diabetes specialist who, in addition to running her own clinical practice, is the president of Foundation VIDA Plena; an organization that works to educate and support the most underserved populations in Cochabamba, Bolivia on topics of diabetes management and care. She has been known to accept bags of potatoes in lieu of money from patients, has herself lived with diabetes for 26 years, and is undoubtedly one of my most favorite people on this earth.
After that first week at camp, I knew immediately that I wanted to work and learn as much as I possibly could from Dr. Blanco, but just as quickly I realized that I didn’t have the words in Spanish to tell her. After an awkward series of conversations, I was invited by Dr. Blanco back to her home in Cochabamba and spent the next six months taking Spanish courses and working as a world literature teacher at an English speaking school in order to cover my costs of living with a family that had been nice enough to take me in.
These first six months were filled with nothing but new experiences, and it seemed I learned, tasted, and tried something new almost every day. Managing the public transportation system was a lesson learned by trial and error in which I passed the time by counting the number of people we were able to fit in each twelve-seat van. Twenty-three passengers still holds the record. Each week I made visits to La Cancha, an enormous outdoor market covering 100 square blocks where you can buy anything from dried llama fetuses and iPods to bananas by the ton.
Public protests and road blockades were common and the equivalent of my childhood snow days, where students rejoiced whenever school was canceled. The times I spent at home with my family, however, remain some of my fondest memories. After living on my own for so many years, it was an entirely new experience coming home to “mom” and my three Bolivian brothers and sisters each day.
My Spanish had also progressed during these months, but I was only able to help Dr. Blanco occasionally as I was constantly working to make lesson plans, grade midterms, and read through the chapters of text I had assigned each of my classes. With my Spanish skills improving, I spent hours discussing would-be plans with Dr. Blanco, and so desperately wanted to get back to doing the diabetes educational outreach work that had brought me to Bolivia in the first place.
The Christianson Grant from the InterExchange foundation changed everything for me. After my teaching job ended, I was able to work full time on the projects I was most passionate about. Suddenly our plan of building a national network of youth living with diabetes was a reality and I couldn’t wait to begin. I spent all of my time in the living room of Dr. Blanco’s house strategizing ways to not only connect the young people in each of the nine departments of Bolivia, but how to incorporate local diabetes professionals to help educate doctors from low-income and rural communities that are often unaware that it is even possible for young children to develop type one diabetes, much less help to manage their condition.
We began by bringing together our older groups of kids that had been a part of Campo Amigo in previous years to formally establish The Red Boliviana de Diabetes Juvenil (RBDJ, or The National Bolivian Network of Juvenile Diabetes) Traveling from all parts of the country, we came together in the city of Sucre where three days were spent establishing the group’s mission and objectives as well as electing nine department coordinators to represent the groups of departmental delegates in each region.
We came up with a name for our network, and after much thought the kids decided upon an image of nine hands (representing the nine departments) interlaced and encompassing the colors of the Bolivian flag that would serve as our network logo. When asked what he thought of the image, 17-year-old Moises said he thought the image made sense because “… it’s kind of true, all we’ve got is each other.” For me that weekend of establishing the RBDJ was a major milestone because we had started something in a country where resources are so limited and I was inspired to see that such an amazing group of young people were willing to get involved. Working with these teens with diabetes was youth development at its best.
Soon after establishing the RBDJ, things began getting really busy, and I began to wonder when, or even if, Dr. Blanco ever slept. Fortunately just a few weeks later, we received news that Dr. Blanco was selected by the organization Artemisia to receive a total of six international exchange interns over the next twelve months. I couldn’t believe it! Interns!
Young professionals with skills that were willing and wanting to work! The week our first intern arrived, I was ecstatic, Barbara was from Brazil and had the same enthusiasm and vision that I remember having just the previous year when I first arrived in Bolivia, except she could already speak Spanish. Within months three other interns arrived, and our workspace slowly began to look more like a working foundation and less like the living room of Dr. Patricia’s home.
By November we were already working on half a dozen projects and knew that camp season was quickly approaching. Held annually, Campo Amigo is an educational program that serves to provide children living with diabetes the necessary education on diet, nutrition, exercise, and blood sugar control to manage their condition and improve the quality of their lives. While the main purpose of camp is to provide campers with critical diabetes education, we also work very hard to make camp as active, engaging, and fun as we possibly can.
It’s often that many of these kids have never met someone else their age with diabetes, and it was incredible to watch as friendships developed, confidence was built, and youth were empowered to better manage their condition. Since it’s first Campo Amigo Bolivia program in 2006, AYUDA has organized, funded, and supported many aspects of camp logistics. Dr. Blanco and her Foundation VIDA Plena were AYUDA’s local partner in Bolivia, and together did incredible things for the diabetes community there.
During that same month, the foundation received the sad news that AYUDA would be canceling the Bolivia program in order to take the time to restructure and organize a growing list of new programs in Latin America. This meant that they would not be able to provide any funding or volunteer support staff for Campo Amigo. We were all devastated as it slowly began to set in that the event that our kids looked forward to most each year would now have to be canceled.
Too late to call off our second leadership conference for the RBDJ, we went ahead and brought together all of our program coordinators and delegates in what was meant to be a weekend of counselor training for Campo Amigo. As we collected kids from the bus terminal, I still wasn’t sure what we were going to tell them or what to do about our leadership and counselor training curriculum that we had already planned out for the weekend. As familiar faces began filing in the room I realized that not having camp simply wasn’t an option. I didn’t know where we were going to find the money, the volunteers, or the medical staff, but none of that seemed to matter at that moment. Dr. Blanco must have had the same realization, because after explaining to the group that AYUDA would not be sponsoring camp this year, she told the group that it was now their turn to take the lead, and that together we could make camp happen somehow, some way.
In the end we accomplished the impossible! Campo Amigo Bolivia 2010 was the product of miracles big and small, requiring the commitment of time and energy from countless individuals. Working together on behalf of one another is what made this camp possible, and echoes back to what Dr. Blanco is always telling the group, “Juntos somos más fuertes!” (Together we are stronger!)
It is said that a lack of diabetes education is just as dangerous as a lack of insulin. This is the guiding philosophy behind the Campo Amigo program, and is why this program is so important to me. Ten years ago, when I was first diagnosed with Type 1 diabetes, I immediately was assigned to a team of diabetes educators that spent weeks teaching me all that was needed to help me better manage my condition. In Bolivia, it is a victory when doctors are simply able to recognize the symptoms and make a timely diagnosis. Rarely do they have the ability to deliver in depth diabetes education. As a result there are a lot of unhealthy children who suffer from a poor quality of life due to the complications associated with their condition.
I first met Katarina in January 2009; she was sixteen years old, weighed less than ninety pounds, and couldn’t walk without a brace due to her weakened state. We made a visit to her home, located in a very poor community in a rural district just outside of Santa Cruz. The purpose of the visit was to speak with her family about Katarina’s condition and to deliver the most basic tools of diabetes education.
Due to her consistently high blood sugars, she had very little energy, was severely underweight, and lacked the life in her eyes you might normally expect from a sixteen-year-old girl. Katarina was able to attend only one day of camp that year, but told us that her experience there made her realize that, with the right information, she too could be healthy. The following year at camp, within minutes of the buses’ arrival, I was met by over fifty familiar faces, smiles, and hugs. Now as a Spanish speaker, I was able to at long last talk and interact with everyone I had met the previous year. There were some new faces as well, and I made it a point to make sure that this group was having fun too. One of the girls I hadn’t seen before was really doing great in all of the education sessions, and having a blast chasing around the others with water balloons during our camp carnival.
We laughed and talked, and she told me how happy she was to be back at camp again. “Again?” I thought, and as she was speaking, it suddenly dawned on me that this girl I had been talking to during the last three days at education and meal times was actually Katarina! I was absolutely stunned to see this healthy, beautiful, and energetic girl stand before me, eyes sparkling and full of life.
For me, Katarina is what camp is all about and reminds us why it is important to support a network of youth living with diabetes. My hope is that the RBDJ will continue to grow and build upon the foundation that Dr. Blanco’s work and dedication has created and inspired.
I cannot begin to express my gratitude to the InterExchange Foundation for providing the means to make my vision a reality, and allow me to be a part of this project. Entering the lives of so many different families and individuals has touched my heart and re-prioritized the things I value in my life. Now back in the U.S, I am working in my own community in the area diabetes education and am inspired to go back to school to get my Masters in International Public Health. In the meantime I continue to scheme, plot, and make future plans to work with Dr. Patricia Blanco.
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