Learning to Live With a Chronic Disease

Washington, D.C. – For most people summer vacations are related to warm days at a beach and memorable moments with their beloved ones. For the Kalter Family, the summer of 2003 will always be remembered as the one that changed their family’s life. Coming back from a trip to Mexico, the Kalters originally planned to visit a bar mitzvah the next day. After getting up, Sandy Kalter quickly realized that something was wrong with her youngest son David. An immediate transfer to the nearest hospital and a quick examination confirmed the pediatrician’s first suspicion: David had acute Hyperglycemia; a common and dangerous result of his till then undiscovered Type 1 diabetes.

“This summer was setting up our new normal,” says Sandy Kalter, 56, a lawyer for a medical technical device company and mother of two sons. “At that time, David wasn’t acting right. He was tired and lethargic all the time. Especially at the morning after our return from Mexico, he didn’t look well.” Her instinct of taking him to a doctor turned out to be the right decision. “They looked at him and knew right away that his blood sugar was too high,” recalls Kalter, the doctors’ diagnose and the moment that influenced the family`s future everyday life. “You come home with your child, your baby, and he can neither eat between the meals, nor eat without testing his blood sugar. Try to explain that to a nine year old boy.”

Especially for children, a chronic metabolic disease like diabetes is a big challenge and will impact, not only on their future life in a long-term perspective, but also their academic career. The National Diabetes Statistics Report 2014, funded by the Center for Disease Control and Prevention (CDC) and published in early August, states that currently one out of three persons will develop diabetes during their lifetime; among them more and more children and adolescents. The report shows that, in addition to the current 208,000 diabetic children (under 20 years), each year estimated 24,000 children are newly diagnosed with one of the two main forms of diabetes mellitus: Type 1 or Type 2; an increasing issue for schools all over the country.

Type 1 is typically diagnosed early in life and it therefore often called juvenile diabetes, although it can occur in every age. The affected person’s pancreas does not produce any insulin due to an autoimmune destruction of insulin-producing beta cells. This hormone is needed to transport the sugar obtained by food from the blood into cells all over the body.

Students like David “must take insulin shots multiple times throughout the day,” explains Dr. Courtney Winston, 35, a registered dietician and certified diabetes educator, working for the Food and Nutrition section of the United States Department of Agriculture (USDA). “The biggest risk for an individual with Type 1 diabetes is `going low´ or experiencing hypoglycemia. This can come on as a result of taking too much insulin, not eating enough carbohydrates, or exercising more than usual.” Younger children are especially endangered by this form of low blood sugar. Those affected with Type 1 always need to carry glucose tablets or some other forms of sugar to consume if they start to experience low blood sugar symptoms.

With nearly 95 percent of all affected people, Type 2 is the most common form of diabetes. Due to an insulin resistance of the cells, the body does not use the available insulin properly. As a result of this the pancreas tries to compensate this lack of insulin, but cannot provide the needed amount to keep the blood glucose level normal. “As a result, glucose, or sugar, builds up in the blood, causing hyperglycemia or high blood sugar,” explains Winston. ”When blood sugar levels get too high, Type 2 diabetes is diagnosed.” This form of diabetes is often closely linked to obesity and overweight because the excessive adipose has a tendency to alter the efficiency of the insulin.

“Though, students with Type 2 diabetes don’t necessarily have to take insulin, but they probably do need to take some kind of medication to keep their blood sugars within the normal limits,” added Winston, sipping on her coffee. This form of diabetes can typically be prevented, unlike Type 1, and can also be treated, but not healed, by a well-balanced diet, physical activity, and a general change to a healthier lifestyle.

Although the number is not increasing anymore and appeared to stabilize, the United States is one of the countries with the highest child obesity/overweight rate in the world with one out of three children. “Food insecurity, junk food marketing for children, low intakes of fruits and vegetables, and high intakes of sugar-sweetened beverages are just some factors contributing to the obesity epidemic among children,” says Winston.

Besides the risk factor obesity, other aspects like family history and also ethnicity have influence on the incidence of Type 2 diabetes. The SEARCH report, a research project funded by the CDC and the National Institute of Health (NIH) to display child diabetes, shows that in the age from ten to 19 significantly more American Indians and African Americans are affected by Type 2 diabetes, whereas the incidence are low among non-Hispanic whites.

“Diabetes is one of the most common chronic diseases among children in the U.S.,” confirms Betsy Rodriguez, deputy director of the National Diabetes Education Program of the CDC. “These reports of increasing frequency are among the most concerning aspects of the evolving diabetes epidemic.”

According to the 2014 CDC report, already 29.1 million Americans have diabetes – either Type 1 or 2; a shocking 9.3 percent of the population. Only in 2012, 1.7 million new cases of diabetes were discovered among people over 20. The percentages of people with diabetes by race show that American Indians and Alaska Natives (15.9%) are mostly affected, followed by non-Hispanic black (13.2%) and Hispanics with 12.8%. The numbers for non-Hispanic white and Asian Americans even out 7.6% and 9%. Furthermore, estimated one out of three adults (86 million) in the United States had pre-diabetes in 2012 and therefore a 15-30% chance to develop Type 2 diabetes within five years.

Undiagnosed or mistreated diabetes can affect different parts of the body and leads to serious long term complications like heart diseases, strokes, kidney failures, blindness and/or the amputation of toes, feet or legs. “Students who don’t take their medications or check their blood sugar regularly and go uncontrolled for a longer time,” says Dr. Winston, a diabetes educator of the USDA, “risk getting sick more often and therefore missing more classes and exams.”

These numbers and especially the development among children and adolescents dispose high schools, colleges, and universities to initiate workshops to prevent diabetes and to increase the awareness of their current and future students and offer proper counseling for diabetic students and their families.

Besides online information and brochures for kids and their parents, the American Diabetes Association provides numerous events all over the country and offers forums and workshops to promote Type 2 diabetes prevention. In addition they fathered a program called Safe at School that encourages high schools to provide support for their diabetic students through written care plans and training for non-medical school staff, as well as to work hand in hand with parents and health providers.

For Winston, diabetes education cannot start too early. “We know that toddlers who have poor eating habits are more likely to become overweight children, and because we know that obese children are more likely to develop type 2 diabetes, we need to start with nutrition education as early as the preschool years.” Therefore, early prevention seminars for children and parents increase the awareness for diabetes and help the parents to understand how to deal with their child’s disease.

After the first shock about her son’s diagnosis was gone and she got familiar with the disease back in 2003, Kalter got in contact with David’s middle school to prepare the teachers on the one hand side and to assure her son’s safety during his time at school on the other hand side. “The first year was pretty tough for us, but the school was simply unbelievable and made the situation so much easier,” says Kalter. “They made David’s disease a part of the learning experience for the kids, for example by letting them guess his blood sugar results. But I know that not all schools are like that.”

Although, field trips, lasting for several days, and upcoming school changes involved some challenges that David and the family had to overcome he grew into a leadership role. Presenting the patient’s view on the disease, he talked at other high schools, big fundraising events, and workshops for the Juvenile Diabetes Research Foundation. He even participated in trips to the Dominican Republic as a counselor to help newly diagnosed families who do not have access to health care.

Today, David is 20 years old and a psychology student at Skidmore College, NY, and has been handling his diabetes for eleven years now. Nevertheless, his mother still wakes up in the middle of the night and needs to fight the urge to call her son to ask if everything is right. “Sure, sometimes I am scared out of my bed, but I know I got to let him go. He now takes care of himself, but I always want him to know that he has a place and people to turn to for support.”

Most academic institutions nowadays also have student health clinics that provide counseling and psychological services for college students and young adults with diabetes and/or support those with Type 2 diabetes with dieticians to develop strategies to eat and live healthier.

“Living with a chronic condition can be quite challenging, especially in times of stress and we know how stressful college can be,” says Winston. Irregular eating times, late night binge studying or library marathons do not really benefit a student’s life with diabetes

But especially well-balanced meals and regular exercise are the key to a academically and professionally successful life, according to American University’s licensed dietician Jo-Ann Jolly from Florida: “Maintaining a healthy diet, eating regularly and being mindful of the different food groups, does not only help students with Type 2 diabetes to follow their recommended lifestyle, but can also prevent other students from getting diabetes.” Small signs next to the food in the TDR give the students an overview about calories and the nutritional value of the meals and should lighten their choices. Besides Jolly’s free nutrition and diet counseling service, the AU’s Wellness Center promotes balanced meal plans to students on campus and tries to encourage a healthier lifestyle.

In general, the awareness about the importance of healthy food and physical activity will become more important, according to Winston, if the numbers of diabetic children and students in the United States are not supposed to increase as drastically as they did so far. “At this point, it’s up to us, the health educators, medical professionals, parents, and other community leaders, to reverse this epidemic by teaching kids how to eat and, more importantly, provide them with the foods and beverages they need to stay healthy and to maintain a normal body weight.”

David Kalter approaches to support diabetic students and children in another way. His Type 1 diabetes, diagnosed more than a decade ago, became his big passion and he chose his career out of it. By working with hospitals and clinics, he wants to share his experience and help other children, who are in the same position now he has been in for eleven years. Many of them suffer under chronic disease related depression and need help, explains his mother Sandy Kalter: “The fight against diabetes is 24/7. And what these kids really need is psychological support.”