Elizabeth Todd Heckel, Haley Weatherford and Ian Picow sound like highly trained medical doctors when the subject of diabetes arises, although they do not actually work in the medical field. Terms such as insulin, implantable pumps, endocrinologist, glycemic index, units, carbohydrates, beta cells, celiac disease, glucose, nerve damage, kidney function and pancreas comfortably flow. This is because they live, hour by hour, with type 1 diabetes.
According to Dana Fulmer, executive director of the Palmetto Chapter of JDRF, (formerly known as the Juvenile Diabetes Research Foundation), type 1 diabetes is an autoimmune disease where the immune system attacks the insulin producing cells in the pancreas, which stops the production of insulin. Without insulin, the body cannot properly break down the food it’s trying to ingest, which can prove fatal. Anyone can be diagnosed with type 1 diabetes, whether at 2 months or 42 years of age, depending on a combination of genetic factors and environmental triggers.
“Type 1 diabetes is not the result of how much sugar or fat you intake or how much exercise you do,” Dana says. “It is very different from type 2 diabetes because type 1 diabetics cannot produce insulin on their own, which they must have or they will go into a coma or seizure quickly. Type 2 diabetics generally still have insulin production, and this type can be managed at times without medication by adhering to nutritional guidelines and incorporating activity.”
Because more and more people are being diagnosed in adulthood with type 1 diabetes, this health problem is no longer called juvenile diabetes. Eighty-five percent of those currently living with type 1 diabetes are adults, and unfortunately, these patients never outgrow this disease
Since there is no cure for type 1 diabetes at this time, living with this chronic disease is about matching sugar intake with insulin injections to keep blood glucose levels as stable as possible. The more stable those levels remain, the less likely immediate and long term health problems, such as blindness, neuropathy, kidney failure and others, will occur. The medical community and diabetics know that managing the disease is both an art and a science, with a host of physical, emotional and psychological challenges. Because of the tremendous medical advances over the past decades, living with type 1 diabetes has become easier. Still, there are many challenges. Those with type 1 diabetes have a choice, 24 hours a day, seven days a week, to control the disease or let it control them.
In 1967, when Elizabeth Todd Heckel was 14 years old, she began to lose weight rapidly and frequently had to get up during the night to use the bathroom. “I secretly researched, and I thought I might have cancer. I didn’t want to scare my parents, so each night I went to the bathroom in a mayonnaise jar and threw the urine out in the morning. That way no one would hear the toilet constantly flush.”
Once she was finally diagnosed, Elizabeth began learning how to live with the disease. Her parents placed the majority of responsibility on her, but they supported her in many ways, such as learning to cook in a more healthy way. “I was upset that my parents made me monitor and stick myself, but much later I realized they were afraid they would do something wrong,” says Elizabeth. “Watching blood sugar is pretty scary for somebody who doesn’t know what they are dealing with. They were afraid I could pass out and die.”
Today, when someone offers Elizabeth sympathy, she responds that it is just a healthier way to live. For example, she has had the same workout routine for 30 years. If she skips several days, her insulin requirements go up. This causes difficulty with controlling sugar levels and increases the possibility of future physical problems. She also seeks out fresher, less processed food, which is better on her body and regulates her sugar absorption.
Elizabeth is now a Certified Diabetes Educator (CDE) and Masters level Social Worker (MSW), and she is passionate about diabetes education and support, as she knows firsthand that living with type 1 can be overwhelming. She teaches a diabetes education group that discusses fears and realities of the disease, and discussions range from basic strategies, such as eating a good breakfast, to complicated formulas involving insulin pumps. She also has worked at a camp for diabetic children for the past 15 years. She says, “I’m now camp grandmamma. I can’t stand to hear people say, ‘Since you have diabetes you can’t do this or you can’t do that.’ It is not my diabetes that causes me, the tallest on the camp volleyball court, to fall down instead of getting the ball over the net. Everybody with diabetes is the same person they would be without diabetes. Everybody has something they deal with, and the beautiful thing is everything in life is contingent on attitude.”
Denial: Normal but Dangerous
One of the toughest psychological challenges of diabetes is that it never goes away, and taking a vacation from the disease is not an option. Denial upon diagnosis is a normal reaction, lasting days, weeks, months or years. However, the longer the denial, the more dangerous the consequences. Fortunately for Haley Weatherford, her denial period was brief.
Haley was diagnosed with diabetes in 2001 at age 12. Haley says, “The date was Dec. 4. Every diabetic remembers their diagnosis date. Each year, my family goes out to dinner on that day, not to celebrate having the disease, but to say, ‘Look what we did this year to overcome type 1 diabetes.’ We reflect on what we’ve done as a family to beat it and give thanks for the newest medical contributions.” She adds with a laugh, “It’s our power dinner.”
Haley is the only one in her family with the disease, and she was immediately surrounded by support, as evidenced by the three carts of teddy bears that came home with her from the hospital. Haley’s brother Hampton, then 5 years old, jumped into action by scanning the pantry, tossing any sugary foods, and quickly learned how to read nutrition labels on boxes.
When Haley told her family she felt alone because she did not know anyone else with type 1 diabetes, Rhonda, her mom, helped change that. They became part of an organization called Bag of Hope, where they began visiting newly diagnosed diabetics and distributing care bags to children. In 2003, Haley and her family started the Pee Dee Walk to Cure Diabetes. She participated as a 2005 South Carolina delegate at the Children’s Congress in Washington, D.C., where she met one of her biggest inspirations, Mary Tyler Moore. During college Haley was a special event coordinator intern for the JDRF and even decided to minor in Health Promotion, Education and Behavior, before she graduated from the University of South Carolina with a degree in Public Relations.
Haley also served as a camp counselor at Camp Adam Fisher with Elizabeth Todd-Heckel. “I love Miss Elizabeth. All of the campers know her and adore her,” she says.
Haley remembers Mark, her father, saying, “Things happen for a reason; God gives you difficulties to face. Don’t look at this as punishment or defeat, but as a compliment because he knows you are strong enough to fight.”
Haley finds that today, as a 24-year-old young professional, the fight is even more trialsome and exhausting. She has a full time job that makes it difficult to get the daily rest that she needs, and she deals with significant medical insurance costs on top of her normal day-to-day bills.
In January 2011, Haley was diagnosed with decreased kidney function. Her desire for life-saving information led her to meet Noah Allen, who has nephrotic syndrome. They scheduled a date to the local health food store to find the best products to use when making a kidney-friendly meal. After walking the aisles of the local grocery store, a jar of organic spaghetti sauce and a night of kidney-talks was the beginning of their deep relationship. With her “half-full” outlook, she credits diabetes for that introduction.
With Noah’s encouragement and her parents’ fearful permission, Haley recently boarded a plane to visit him in Europe. Travel, particularly across time zones, offers many challenges to a diabetic. In fact, at one point she had to scramble to find the right kind of insulin.
Despite Haley’s positive attitude, at times she gets frustrasted with her diabetes. “It’s a loss of control,” she says. “Your body is supposed to naturally produce insulin, just like breathing. It’s something you shouldn’t have to think about it. Your body is supposed to produce the beta cells that produce the insulin to attack the carbs and be done.”
Still, when Haley feels overwhelmed she reminds herself, “We are only guaranteed today. For me personally, I think God allowed me to have this disease for a reason. It’s brought a wonderful man into my life, my family is closer, and I have many opportunities that I would not have had without the disease.”
Donations Lead to Breakthroughs
Ian Picow, owner of King’s Jewelers on Main Street in Columbia, goes to work every day with a small insulin pump at his side and his emergency candy – four large SweetTarts in his back pocket – which his children have sometimes asked him to share. Ian was diagnosed with type 1 diabetes on July 4, 1966, as an extra-thirsty 11-year-old hoping soon to start camp. His athletic and active son, Brandon, was also diagnosed around his eleventh birthday. When discussing his diabetes, Ian veers the conversation toward a cure and a full life for his son and his admiration for how well Brandon has managed his disease. Like father, like son.
“The improvements in technology for managing diabetes are unbelievable. When I first was diagnosed as a diabetic, the way I had to take my blood sugar was to put five drops of urine in a test tube with ten drops of water, then I dropped a tablet in to see what color it turned. Then I had an estimation of what my blood sugar was. Blue was the best, orange was the worst. I joke that I don’t like Clemson orange.”
Today, instead of injecting himself with shots throughout the day depending on food intake, activity, illness and stress, Ian receives insulin through a pump. Over the years, pump sizes have grown smaller, and they’ve become more efficient. One reason for these improvements is the willingness of people like Ian to participate in studies. In the 1980s, Ian checked into the Medical University of South Carolina for a week, was put on the first insulin pump and ate the exact same thing for seven days while doctors and nurses monitored him. “It wasn’t fun, but I knew it would help us move toward a cure, for my son and for others,” Ian says.
Ian vividly remembers running home from school at age 12, one Valentine’s Day because he was taunted for not being able to eat the candy. Today, he is heartened that there is more public awareness and understanding of the disease. Yet, most people do not realize how difficult it is to keep blood sugar in a healthy range. “It’s trial and error. It doesn’t matter how careful you are. Sometimes my blood sugar is up even though I haven’t eaten anything – it just happens. We are as careful as we can be, but it still happens. We don’t know why. Managing it is tough. It is a full time job.”
Ian’s sugar has never been so low that he could not communicate that he needed help, but he knows it could happen any moment. He has a card in his wallet and a sticker in his car indicating that he is diabetic, and always those SweetTarts are in his pocket.
Ian has seen type 1 diabetics who have had serious complications. He says, “That scares the daylights out of me. God forbid that could happen to me. It could be that someone is not careful enough, but it’s just so tough. I could eat the same thing three days in a row and still need different amounts of insulin just because of the way my body absorbs the food and how stressful a day I have had.”
Brandon has not let diabetes hamper his athletic pursuits, running up and down the basketball court while his pump waits in his gym bag. Just after Brandon’s diagnosis, Ian kept a monitoring eye on him several times a night. “Sometimes I would ask Dad why he kept coming into my room. He would just smile and say, ‘I’m just checking.’” Today Brandon is a college student and texts his dad almost every morning so Ian knows he is okay and ready for another day of managing and living with diabetes.
Elizabeth, Haley and Ian take one day at a time, thankful for how far medical advances have come. Despite excitements and setbacks, they continue the art and science of daily choices to manage, stay active and overcome, until the cure is found.
For more info, visit www.jdrfpalmetto.org. To become an advocate, visit www.jdrf.org/advocacy or call (803) 782-1477.
SIDEBAR: Advocacy at Work
This past summer, 12-year-old Hannah McCrary of Lexington traveled to Washington, D.C., where she joined 150 other children with type 1 diabetes on a very important mission: to remind members of Congress of the need to continue supporting research for a cure. Ranging in age from 4 to 17 and representing all 50 states and the District of Columbia, these children served as delegates to the JDRF 2013 Children’s Congress, a biennial gathering on Capitol Hill. They met with members of Congress and spoke at a Senate hearing, telling lawmakers of the struggles they face every day as they live with the disease and urging them to continue funding the Special Diabetes Program.
Hannah has been living with type 1 diabetes since she was 7 years old. “From the day I was diagnosed, my parents’ goal was for me to lead as normal a life as possible. They wanted me to be able to do anything I wanted. They did not want diabetes to hold me back in any way.” Still, she says, there’s nothing normal about having to check blood sugar levels before every meal and snack, about having to think about the potential effects of every bite of food, or about having to pack a bag of supplies for every trip away from home, even if it’s just going to the store with her mom. “Diabetes often interrupts my life. I have to stop what I’m doing and check my blood sugar and then determine what I need to do next. I have had to learn a lot of things and take on responsibility that most kids my age don’t have.”
Hannah and her family have been tireless advocates for the JDRF Palmetto Chapter, mentoring families with new diagnoses and helping to raise awareness and funds for a cure. Serving as a delegate to Children’s Congress was important to her, because the Special Diabetes Program has helped make possible many of the tools that she uses to treat and manage her diabetes. Perhaps one of the most important aspects of the Special Diabetes Program is that it has helped advance the Artificial Pancreas Project through the many phases of FDA approval. While many diabetics currently use an insulin pump to deliver insulin, an artificial pancreas system will virtually eliminate dangerous highs and lows by automatically increasing or decreasing the amount of insulin needed. That’s something that Elizabeth, Hannah’s mother, hopes comes to fruition before Hannah heads to college in six years.
“I have to admit that sometimes I get tired of going to so many JDRF events and talking about diabetes all the time,” Hannah says. “I like seeing my friends who are also living with diabetes, but we just want to hang out and play. We don’t think it’s normal for kids to have to talk about diabetes and be so serious all the time. After all, we are just kids.”