I wrote this article for Build magazine (distributed nationally in Sam Goody stores) in Fall 2005…. I think the final published version was edited down for size, but this was the full thing.
It was an especially chilly February morning as my mother and I drove to the doctor’s office. After having been too sick to drag myself to school for two days running, I was eager for the doctor to provide some relief, and assumed I would be put on antibiotics and promptly sent on my way. Instead, I suddenly found myself lying in a hospital bed, diagnosed with type 1 diabetes.
It was Valentine’s Day, I was 16-years-old and nowhere on my to-do list was a hospital stay. Instead of finishing my chemistry lab and attending the school play, I found myself sitting through a crash course on diabetes, and only beginning to realize that I would have to manage this disease for the rest of my life.
That day undoubtedly changed my life forever. I had barely any inkling of what diabetes was about. I couldn’t get diabetes, I thought. However, according to statistics compiled by the American Diabetes Associations (ADA), youth are far more likely to develop type 1 diabetes than any other childhood chronic illness. Coupled with the fact that diabetes is considered to be the fifth deadliest disease in the United States today, and that an estimated 18.2 million people in the United States currently suffer from the illness, not to mention the 180 million people worldwide, and it is clear that diabetes is far from being trivial or contained. The prevalence of type 2 diabetes is also rising among youth, echoing worries of the modern world’s increasingly sedentary lifestyle and absence of nutritional eating. Currently, somewhere between 8 to 45 percent of youth diagnosed with diabetes in the US have type 2.
There are three general types of diabetes: type 1 (previously known as juvenile-onset diabetes or insulin dependent diabetes), type 2 and gestational diabetes. Although the causes and mechanisms of each type vary, the result is the same: the body is unable to metabolize food because of a lack of viable insulin. Basically, think of insulin as key your body’s cells need to use sugar. Type 1 diabetes, which I have, is characterized at diagnosis by weight loss, extreme thirst, elevated blood sugar levels and ketones (a type of acid) in the blood. By the time I was diagnosed, I weighed barely 90 pounds, was drinking at least six liters of water a day and was constantly fatigued. There were other symptoms I noticed too: confusion, headaches, sore muscles and blurred vision. On the other hand, type 1 diabetes only accounts for small percentage of diagnosed diabetes mellitus cases; approximately 95 percent of all diabetes cases are type 2, which is often linked to obesity, sedentary lifestyle and smoking.
I remember sitting in the cold doctor’s office, game face on, thinking, Okay, so I have diabetes: what does that mean? It means that I check my blood sugar between five to 10 times per day, everyday, and that I wear an insulin pump to supply my body with the insulin it needs. The pump is about the size and weight of a small pager and is connected to my person via small plastic tubing and an even smaller piece of tubing called a cannula, which is inserted under the skin, usually around the waist area. Called infusion sets, these are changed every three to four days. It is a balancing act every single day to maintain healthy blood sugar levels along with a good diet and exercise, in order to ward off the specter of future complications.
About three years after being diagnosed, I met Clare in the cafeteria at college. I noticed the insulin pump she was wearing and decided to introduce myself – I had only known a handful of other diabetics since diagnosis and was eager to meet more. That chance lunchtime meeting grew into a friendship and an experience with Novo Nordisk’s Young Voices project, which was, in a word, surreal. Now, myself, Clare, Daniel and Erik, all living with diabetes, are known as “The Fab Four” in a book titled Young Voices, Life with Diabetes, which is a collection of eight stories about 13 youth from around the world, living with type 1 or type 2 diabetes.
I found this project rather unique because finally, resources are being developed for children and young adults who both have the disease or are at risk of contracting it. From this project, I also learned a valuable lesson: a sense of community is important. As with any health issue, finding a community of like-minded youth is crucial to maintaining a healthy lifestyle with diabetes and staying sane while you’re at it.
The numbers can be frightening. Diabetes certainly has its cost; nearly one out of every 10 health care dollars spent in the US is diabetes-related. Diabetes was the sixth leading cause of death in the US in 2000, and complications of uncontrolled diabetes include vision loss, nerve damage, kidney disease, heart disease and death. The good news is, however, that these complications can be avoided if we take control of our health and of our future.
All the same, I feel incredibly lucky. I live in a part of the world where I have never had to worry about the cost of test strips or wonder if I will be able to have my insulin tomorrow. More than anything, it alarms me to think that in 2025, 80 percent of the world’s people with diabetes will be from countries with little or no access to adequate health care.
So what can we as youth do about this growing worldwide epidemic? We can each begin in our own backyards, with our own lives. It is true, diabetes is not entirely selective in where it strikes, and no one is wholly immune, but there is something we can do. Although we cannot prevent or predict type 1 diabetes, type 2 diabetes is preventable. Everyone can do themselves a favor by living a healthy lifestyle with good nutrition, regular exercise and abstaining from smoking. Events like the annual ADA Tour de Cure bike race is an entertaining way to get moving and to raise advocacy and funds for a cure. Remember as well that although diabetes is a tough disease, it can be managed. And when we take care of ourselves, we can also begin to tackle the diabetes crises arising throughout the world.
Overall, I’ve learned to adapt to having diabetes and to making the method of treating it adapt to my life. Nevertheless, I am always looking forward to the day we find a cure. I, along with millions of youth around the world like me, am a normal person – we all just have one more thing to balance in our lives: diabetes.
To learn more about diabetes and how you can get involved, these Web sites have excellent information:
The American Diabetes Association www.diabetes.org
The World Diabetes Foundation www.worlddiabetesfoundation.org
Novo Nordisk www.novonordisk.com
Diabetes Aware www.diabetesaware.com
Young Voices, Life with Diabetes can be purchased from Amazon.com or at www.wiley.com. Proceeds from the sale of the book go towards helping children with diabetes in developing countries like Tanzania, through the help of the World Diabetes Foundation.