An excerpt from my interview with Sam Wohns, 22 years old, who's been an AYUDA volunteer since his diagnosis with type 1 diabetes at seventeen.
Sam: “When I was diagnosed, I knew how fortunate I was to have access to first-rate supplies and education. I recognized that my diabetes might be inconvenient at times, but that it would not change what I could do with my life.
I knew that wasn’t true for people living with diabetes in lesser-developed countries, where type 1 diabetes is a life-threatening condition. That disparity deeply bothered me then, and it still disturbs me today. I do not think your access to essential medicines should depend on the chance circumstances of your birth.
I’ve always been aware that I was lucky to be born to a loving family in an affluent country. My parents instilled a global outlook in me from an early age. When I was 10-years-old, they gave me a book about the world’s different cultures. On the last page was a spinner. Whatever country the spinner landed on you had to answer this question, “How many calories do people there eat every day?”
I discovered that many young people live on less than 900 calories per day. My leftovers were equivalent to many children’s daily food consumption. The next day, I only ate 900 calories of rice, as an act of solidarity. I wanted to do more, so I asked for donations to hunger relief organizations for my eleventh birthday.
Diabetes inequities strike even closer to home. I see the inequalities in access to diabetes supplies and education as a threat to the human right to health. I wanted to help end that injustice through advocacy and education, which led me to AYUDA.
I’ve been involved with AYUDA since the week after I was diagnosed with diabetes. Before enrolling in college, I volunteered and studied for a year in South America, where I met people living with diabetes who are so thin that you can see their ribs. In Ecuador, there isn’t a single pediatric endocrinologist or nurse educator. In Bolivia, many health clinics lack basic diagnostic devices, like glucometers. AYUDA trains young people to become peer educators and helps local diabetes foundations expand their capacity. It makes all the difference.
While in Ecuador, I met one little girl and her grandmother before a weeklong diabetes family camp. The little girl had a glucometer, which she usually used to test her blood sugar once a day. She ran out of strips four days before camp started, though, and her grandmother decided not to come because it would mean missing work.
They lived several hours away, so a group of us drove to their house and persuaded them to come to camp. There the grandmother met other parents and children with type 1. She left better educated on how to take care of her granddaughter. We didn’t solve all her problems, but I am hopeful that she and her granddaughter will be able to lead healthier, happier lives with a peer group and the support of the Juvenile Diabetes Foundation of Ecuador.”
An excerpt from my interview with Isabel and Madeline Chin, high school students who are also AYUDA volunteers. Isabel got type 1 diabetes at the age of two, yet her twin sister, Madeline, doesn’t have the disease. Madeline and the twin’s four siblings get tested for diabetes every year.
Riva: Based on your experience with AYUDA, what do you see governments and businesses can do to help more?
Isabel: Something AYUDA and the foundation where we were in Ecuador does, which is great, is speak to governments sharing with them what living with diabetes is like and how it impacts people’s lives. I'd like to see more being done to educate people who don't have diabetes, to create a more empathetic culture. But the foundation is working on this.
Madeline: We had a representative from the government talking to those of us from AYUDA and the Ecuadorian foundation and you could tell he didn’t have a grasp on diabetes at all. He said you guys should have a march and let yourselves be known. It made me realize you can’t just tell a government what diabetes is and how it affects people, there really needs to be a paradigm shift for how people view chronic diseases and public health in general.
R: What surprises did you encounter during your AYUDA experience?
I: While we bring all these supplies to have a safe environment for the kids at camp, we're really trying to mimic what the kids will do at home, so that when we send them back home they’ll be able to sustain whatever they learned. So, if they’re from a poor region and, for instance, can only take one or two shots a day and wouldn’t take insulin after snacks at home, that’s what we have to do at camp. It was hard watching a kid have a snack and then not be able to take insulin for it and then have their blood sugar go high.
M: Positively, one thing that surprised me was how responsive the kids were and how willing just within a few days they were to try new things. It was amazing too to see the kids help each other. There was one boy we couldn’t get to try something but the other kids got him to do it.
R: What do you take away from this experience?
I: We’ve both been interested in advocacy and medicine, but now public health has really become our passion. Being at the camp, it wasn’t just about teaching the kids but seeing them get excited about taking control of their life with diabetes. I also just loved being a diabetic with them.
M: I’d worry at times if a five year old really got an educational lesson. But by the end I understood it was about creating a safe environment where they could participate in the activities and be with other kids who have diabetes, rather than learning any one lesson. We really feel like we helped empower them to take care of themselves. And I found visiting families’ homes and seeing how little they had shifted my perspective. It gives us both a lot of gratitude for how we live here.