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
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.