One man shares his family’s struggle with the most common chronic disease in America.
It’s a normal Monday night in late April at the McIntosh household when the doorbell rings. At the door is our friendly UPS guy delivering a box with the brand name Medtronic emblazoned on one side; the box is addressed to my 9-year-old daughter, Lily. Inside is her brand-new purple insulin pump. After posing for a few photos to post on Facebook and Instagram, we set out to start learning how to use the new contraption. It’s an exciting, albeit bittersweet, moment. For the first time since Jan. 20, 2013, my wife, Elizabeth, and I can sense that life may soon return to a relative state of normal. It was on that day, one year, four months, and nine days ago, that Lily was diagnosed with Type 1 diabetes.
Like Vladimir Putin marching through the Ukraine, Type 1 diabetes has wreaked havoc on my family for the last 30 years. My sister, Dana, was diagnosed at the age of 10 in 1984; I was diagnosed in 1989 a month shy of turning 17; my sister’s daughter was diagnosed three years ago at age 5; and my youngest daughter last year at age 8. Even my mother, now in her 60s, was diagnosed a decade or so ago with what was originally thought to be Type 2 but is now considered Type 1 diabetes. To say we’re sick of this disease is a slight understatement.
Personally, I’ve handled diabetes as most stubborn males of the human species are wont to do. I check my blood sugar daily and take my insulin when it’s called for, but, other than that, I just roll with it. I’ve always said ‘meh’ to the idea of a pump, I’ve never really been interested in local advocacy efforts, and, for the most part, lived my life as normally as possible. All that changed when Lily was diagnosed.
It’s not only the 2 a.m. blood sugar checks, the regular insulin injections, the incessant number crunching and carbohydrate counting, and the constant worry that are getting to me, but the lack of understanding about diabetes as well. The number of people with Type 1 and Type 2 diabetes adds up to one of the most common chronic diseases, locally and nationwide. I’m convinced it’s one of the most misunderstood as well. Those dealing with diabetes know exactly what I’m talking about. How often have we heard comments such as, “You’re not supposed to eat that,” or, “My uncle with diabetes had to have had his legs amputated by the time he was 50,” or my favorite, “You have diabetes? You don’t look fat.”
More than 11 percent of Alabama’s population has either Type 1 or Type 2 diabetes; I believe it’s time correct the myths and help us all better understand these diseases.
Perhaps the most misunderstood aspect about diabetes is discerning the differences between Type 1 and Type 2. Both diseases involve elevated sugar levels in the blood; however, as Dr. Rodgrigo Valderamma, endocrinologist with Trinity Medical Center explains, that’s about where the similarities end. “The term diabetes means high blood sugars, which is what happens in Type 1 and Type 2, but by different mechanisms,” says Valderamma. In Type 1, the autoimmune system attacks the pancreatic cells, called beta cells, responsible for the production on the hormone insulin, which is responsible for regulating blood sugar levels. Medical professionals are convinced something “triggers” the body to attack these beta cells, but the identity of that mysterious trigger is unknown. “They’ve looked at particular viruses, and there’s a debate about what kind of environmental exposure potentially might set it off, but there’s been no good evidence exactly what that is,” says Dr. Mary Lauren Scott, a pediatric endocrinologist with Children’s Health System. A Type 1 diabetic herself, Scott says Type 1 is similar to other autoimmune diseases such as multiple sclerosis, lupus, rheumatoid arthritis, and thyroid disease in that there is no indication as to what triggers them, but they all involve the autoimmune system targeting and doing damage to the body’s organs. “If the body destroys the thyroid, you have to take a tiny pill every day,” Scott says. “Unfortunately with Type 1 diabetes, the pancreas is a little bit more complicated than that as far as trying to replace it.” To state it simply, there is nothing one can do to cause or prevent Type 1 diabetes, and, at the present, there is no cure.
While Type 2 diabetes also results in elevated blood sugar levels, how those levels occur is completely different than Type 1. “For Type 2, the mechanism is a little bit different. The major problem is resistance to the action of insulin,” explains Valderamma. The most frequently diagnosed form of diabetes in the U.S., especially throughout the Southeast and Alabama, Type 2 is commonly related to lifestyle issues, but there are other risk factors. “While we hear a lot about it in the media and there is a link between obesity and Type 2 diabetes, it’s not always that way,” says Aimee Johnson, executive director of the American Diabetes Association, Birmingham chapter. “Age is the No. 1 indicator of Type 2 diabetes.” Family history, ethnicity, and gestational diabetes also play a part in a person’s likelihood of developing Type 2.
For the past decade we’ve been treated with endless media reports about the obesity crisis throughout Alabama. Of course, one of the statistics often cited is the rise in Type 2 diabetes throughout the region. While Type 2 diabetes is a serious health issue, the problem I’ve always had with many of these media reports is so many of them simply use the term “diabetes,” and I’ve often wondered if this was a contributing factor to the confusion. As I started working on this story, I quickly realized that I’m not alone. “I think there has been a whole lot more emphasis put on Type 2 diabetes over Type 1, so I think when the general public hears the word diabetes, that’s automatically the assumption,” says Jan McMahan, a diabetes educator with Trinity Medical Center.
Why is the fact that Type 1 and Type 2 are different a big deal? While they share some common symptoms, such as constant thirst and frequent urination, one of the key indicators of Type 1 is sudden weight loss, not weight gain. Furthermore, undiagnosed or misdiagnosed Type 1 diabetes can have serious and even deadly consequences, says Aubrey Miller, executive director of the Juvenile Diabetes Research Foundation, Alabama chapter. “I’ve been with JDRF for five years, and during that time I’ve seen two elementary school children die because they were either undiagnosed or they were treated in an improper way,” says Miller. He adds that being informed is the most important part. “It’s a life-and-death situation, and unless people pay it attention, deaths can take place. There is just no need for that to happen.”
Even the well-informed don’t always take the symptoms seriously. Take my family for example; despite having a family history of Type 1 diabetes, my wife and I did our best to explain away Lily’s symptoms: “She’s drinking a lot because she’s been playing outside in the heat all day. She’s going to the bathroom a lot because she drank a lot of water at P.E. today.” Finally, we decided to check her blood sugar one morning. I’ll never forget the number on the glucose meter: 377. Normal blood sugar is anywhere between 80 and 120.
We took her to the emergency room and were lucky to catch her diabetes relatively early. Another few days and she could have been seriously ill due to a condition called ketoacidosis, which is a dangerous build-up of acids when the body begins burning fat for energy. Ketoacidosis is what causes diabetic fatalities, but its signs can be confused with any number of normal childhood illnesses, such as the flu or a stomach virus.
Spreading the word about the signs and symptoms of diabetes is the mission of Laurel Whitt, a mother with two diabetic children, and a local JDRF advocate. Whitt’s eldest daughter, Meredith, now 10 years old, was diagnosed at the age of 2, while her middle daughter, Mallory, was diagnosed two years ago at age 7. Whitt says Mallory began showing signs of diabetes while on a family beach trip in 2012 but, even with another diabetic child in her care, she still had trouble believing the warning signs were real. “I kept thinking, ‘Boy, she sure is thirsty.’ I thought, ‘But it’s 110 degrees outside,’ trying to justify it,” Whit says. That night she got up to check Meredith’s blood sugar and found Mallory was up using the restroom and decided to check hers as well. The result was 84, well within normal range. “I went, ‘Thank the Lord, it’s fine.’ And then two days later we’re driving back from the beach, and we’re stopping every 40 minutes: ‘Mom, I’m thirsty. Mom, I’ve got to go to the bathroom,’” Whitt remembers. “We were sitting in a gas station in Montgomery and I said, ‘I hate to tell you this, but I’m going to check you again.’ This time the glucose meter simply said, ‘HI,’ and it wasn’t just saying ‘hello.’ It meant her blood sugar was so high the machine couldn’t calculate it. It’s not something you ever want to know,” Whitt says.
Type 1 diabetes used to be known as “early onset diabetes” or “juvenile diabetes” because it was once thought to only affect children. That old way of thinking has now been proven false. Anyone at any age can be diagnosed with Type 1 diabetes. “The frequency of children under the age of 3 years [old] has increased dramatically,” says Miller. He also says the frequency in which people over 50 are being diagnosed is staggering: “That frequency is alarming. The rate is almost up there with children.” Part of the reason for the rise in adults with Type 1 could simply be a better understanding of the disease, says Dr. Aneth Shalev, an endocrinologist and the director of the UAB Comprehensive Diabetes Center. “With the old nomenclature of ‘juvenile diabetes,’ people were so reluctant to even consider the diagnosis of Type 1 as an adult that I think it was often misdiagnosed, but I think this is getting better,” Shalev says. “There is really no age limit.” In fact Dr. Shalev once diagnosed a woman with Type 1 at age 84.
Still, the instinct is to incorrectly diagnose adults with Type 2. This is the scenario that happened to Southside resident Dan Nesbitt. Now 42, Nesbitt first began showing symptoms almost 15 years ago, although it took a few more years to identify the problem. “When I was 25, I weighed about 190 pounds, and by the time I was 32, I was down to 132 pounds. I just lost a ton of weight,” Nesbitt says. He also began experiencing other problems associated with diabetes, such as blurry vision, constant thirst, and feeling worn out. His doctor initially put him on oral medications, such as Metformin, the most effective treatment for Type 2 diabetes. “None of them even made a dent. I finally got off the orals after a while and responded really well to the insulin.” By his mid-30s, Nesbitt was finally diagnosed as a Type 1 diabetic. “I’m insulin-dependent for the rest of my life,” he says.
During this journey, I’ve learned that people with Type 1 diabetes are vigilant about differences between the two diseases. Much of that defensiveness, however, isn’t directed toward people with Type 2, but due to the public perception of Type 2 diabetes. “Whenever there is a diabetes story, you can guarantee they’re going to show some huge back of somebody’s bottom as they talk about a diabetes study,” says Johnson. “It is infuriating.” It’s also disrespectful. While it is true that Type 2 diabetes can either be prevented or delayed by some modest weight loss, the caricature of the Type 2 diabetic is, frankly, disgusting. “When I worked for the American Cancer Society, people would come in with an oxygen cannula, smoking a cigarette, with lung cancer and they were called a ‘survivor.’ But, for some reason, we blame people with diabetes,” says Johnson.
According to the American Diabetes Association, 25.8 million people across the nation have Type 2 diabetes; however, only 18.8 million of them have been diagnosed. That leaves seven million people in the U.S. undiagnosed. Johnson is convinced part of that reason is fear of being a social outcast. “When you have that kind of blame game then you get people who don’t say that they have diabetes,” says Johnson. “I’ve given speeches and asked how many people have been affected by diabetes, and about three people raised their hand in a roomful of a hundred. They’re not going to raise their hands because they know people are going to blame them.”
It’s important to realize weight is only one risk factor, and that there are plenty of thin and active people living with Type 2 diabetes. Many more are living with a condition called prediabetes, which is marked by elevated blood sugar levels that aren’t high enough to be considered diabetes. With proper lifestyle adjustments, a person with prediabetes can prevent or delay the onset of Type 2 diabetes. Birmingham is lucky to have several programs designed for this purpose, such as the UAB Diabetes Prevention Program and the YMCA’s Diabetes Prevention Program. The YMCA’s program meets for 16 weeks in a group setting and teaches participants skills to help them take control of their health. A certified instructor provides information on fitness and nutrition, some of which sounds counterintuitive at first. “When people are diagnosed with prediabetes they immediately think, ‘sugar,’ and they want to count their carbohydrates like you and I do,” says Debby LaCruz, director of the program. “We almost look at diabetes as an allergy to sugar.” She points out that research conducted by the Center for Disease Control shows that the amount of carbohydrates taken in doesn’t have much of an impact on a future diagnosis of Type 2 diabetes. What has an impact on future diagnosis is body weight. “What the research has figured out for us is that the people who went through the major study lost 7 percent of their body weight, and that’s what reduced the risk,” she says. “How did they do it? They reduced the amount of fat intake, which reduced their caloric intake, which helped them lose weight. They weren’t counting carbohydrates. It’s weight.”
Jaronda Little, a recruitment professional with the Alabama School of Fine Arts, completed the YMCA’s Diabetes Prevention Program a year ago after being tested for prediabetes. Although the test came back negative, Little had several of the risk factors for Type 2 diabetes, including a family a history of diabetes and other chronic health problems, and being overweight. “That was my wake up call,” Little says. “For me it was all about making sure I don’t repeat the same practices that I’ve seen other family members do, winding up on tons of medication, hospitalized, or even dying.”
Every now and again, when I’m having a low blood sugar moment or having a hard time getting things under control, I’ll say to my wife, “Have I ever told you how much I hate diabetes?” I usually either get a sympathy laugh or an eye roll, but this statement has really become true since Lily’s diagnosis last year. It’s no longer a joke: I seriously despise this disease, but I understand it better now than I ever have before. I also know that treatment of diabetes is as good as it’s ever been and that Lily stands the chance of living a much more normal life than her old man. However, as we poke our little girl with needles every day and deal with the exhaustion of not having an uninterrupted night of sleep in a year and a half, let me just say it one more time: Have I ever told you how much I hate diabetes?
For decades, Type 1 diabetics have heard the hopeful news that a cure was right around the corner. Needless to say, the science hasn’t quite gotten us over the finish line just yet. The primary reason: It’s really, really hard to find cures for autoimmune problems. But that’s not stopping scientists from all over the world from trying. One of the world’s leading diabetes researchers is Dr. Anath Shalev, director of the UAB Comprehensive Diabetes Center. Shalev is making some amazing breakthroughs; among them is a recent study in which laboratory mice with diabetes were, for lack of a better word, cured.
After discovering a gene called thioredoxin interacting protein (TXNIP) that is responsible for pancreatic beta cell death, Shalev believed there must be a way to inhibit the destructive action of TXNIP and prevent diabetes from beginning in mice. In the lab, Shalev and her team were able to delete TXNIP from a group of mice, which led to some exciting results. “(The) mice were completely protected against both Type 1 and Type 2 diabetes. There was no diabetes in mice that didn’t have that protein,” she says. “That was very striking.”
Though she was able to prevent diabetes from occurring, Shalev realized that most endocrinologists only encountered patients after a diabetes diagnosis, leading her to wonder if it’s possible to cure mice with diabetes. Her research led her to an accepted blood pressure medication. “We stumbled over a drug that is very commonly used, actually a calcium channel blocker called Verapmil,” she says. Shalev and her team made a group of lab mice diabetic, pushed their blood sugar to 300, and waited until they were very sick before administering the drug orally through in drinking water. “Lo and behold, they got better and they completely reverted. Their blood sugar completely normalized,” Shalev says. “They have been rescued and cured from their diabetes.”
While this is great news, remember it can take 10–20 years to get a drug—even one already on the market—approved for a new use. However, diabetics all over the world may one day be able to thank Shalev and some brave lab mice for curing diabetes.
With so much misunderstanding about diabetes in the community, it’s sometimes necessary to fight for the rights of diabetics, particularly children. Recently, the ADA and JDRF pushed the Alabama State Legislature to pass the Safe At School legislation. Alabama Senate Bill 57, signed into law by Gov. Robert Bentley on April 11, 2014, authorizes school administrators to administer insulin or glucagon (used in the case of dangerous low blood sugar) if a school nurse is not present.
By law, school systems are supposed to have a school nurse present at any school with a child with diabetes. However, particularly in some rural districts, this mandate is economically unfeasible. The new law allows other school personnel to care for a child with diabetes since a nurse simply can’t be in more than one place at one time. “We’re moving in the right direction,” says Aimee Johnson, executive director of American Diabetes Association of Alabama. “The ADA is committed to ensure these kids are safe at school and that when you drop your child with diabetes off at that school, we’ve done everything we can to ensure that the people who work at that school are going to be able to take care of that child instead of just calling the paramedics or calling a nurse who is half a county away.”
Alabama motorists can now show their support as they drive around town with the new Hope for Kids with Diabetes license plate. The specialty tag costs $50, with $41.25 going directly toward pediatric endocrinology at Children’s of Alabama. Proceeds from sales of the tag help fund patient care, physician training, and research for the thousands of children in Alabama living with diabetes.
“By purchasing the Hope for Kids with Diabetes tag, Alabama drivers will not only help raise much-needed funds, but will also increase awareness of this growing health concern,” says Dr. Kenneth McCormick, director of pediatric endocrinology at Children’s. “Every tag is like a small billboard promoting the need to help these youngsters who must deal with a serious chronic illness every day of their lives.”
More than 2,600 kids are currently being treated for diabetes in the pediatric endocrinology division at Children’s of Alabama, about 1,700 with Type 1. Their care is coordinated through a comprehensive multi-disciplinary team that includes pediatric endocrinologists, specialized nurses, diabetes educators, dietitians, insulin pump specialists, and social workers.