A couple of years ago, 9-year-old Bluffton resident Niklas DiCarlo came home from school with a sore throat. Over the next day he became more and more sick. His parents took him to the emergency room when he started having a hard time breathing.
Niklas left the hospital with a diagnosis of strep throat and a prescription for amoxicillin. But within the next several hours, his condition quickly worsened. And at about 5 a.m. the next day, Niklas' mom, Michele DiCarlo, said she awoke to the sounds of her son hyperventilating and bumping into walls.
"He's curled up in a ball on the stairs, looks emaciated, lost 12 pounds overnight," Michele said. "His tongue was swollen, he couldn't talk and didn't know where he was."
Niklas went back to the emergency room, but this time a doctor checked his blood sugar, and it was through the roof.
Niklas was diagnosed with Type 1 diabetes, a life-threatening condition that causes the immune system to attack the cells of the pancreas that are responsible for making insulin.
"Insulin is the hormone that your body uses to put sugar into the cells to help the sugar do what it needs to do," pediatric endocrinologist Dr. Bryce Nelson said. "When that hormone is deficient, then blood sugars go up and diabetes ensues. So the problem in children who have type 1 diabetes is that their body isn't making insulin."
Medical director of the Pediatric Diabetes Program for the Greenville Hospital System, Division of Pediatric Endocrinology, Nelson will speak locally about Type 1 diabetes at an upcoming fundraiser for the No More Diabetes Foundation. The DiCarlo family started the foundation to raise money for education, treatment, prevention and research to eradicate the disease.
CAUSES OF TYPE 1 DIABETES
Nelson said experts still don't know for sure what causes Type 1 diabetes, also known as juvenile diabetes. They do know there is some genetic component to it, though.
Nelson and others are studying that link through TrialNet, the largest trial in the world for Type 1 diabetes. He said they have screened more than 100,000 family members of people who have Type 1 diabetes worldwide.
They are studying the natural history of the disease -- meaning who is at risk, when they develop it and the circumstances that lead to them developing it.
"The goal is if we can understand how they're developing it and who's at risk, then we can find those people beforehand and try to prevent them from ever getting the disease," Nelson said.
But genetics isn't the only possible cause of the disease. Nelson said there could be environmental triggers as well. There's a possibility that certain viruses predispose people to the condition.
LIVING WITH THE DIAGNOSIS
Nelson said insulin is the only treatment for juvenile diabetes.
"We give it by trying to mimic the way the pancreas normally produces insulin," Nelson said. "So most children start out on at least four injections a day and have to check their blood sugar by pricking their finger anywhere from four to 10 times a day."
Niklas, now 12, receives his insulin by pump.
Children with Type 1 diabetes also have to closely monitor what they eat. Niklas' father, Staff Sgt. Bob DiCarlo of the Beaufort County Sheriff's Office, said his son can't eat everything other kids get to eat.
"At 9 years old, he's a kid that literally had to grow up and learn an adult responsibility overnight," Bob said. "All of a sudden you tell a 9-year-old that there's no more regular soda, and there's no more candy when you want it. There's no more birthday cake or cookies. ... He can't be a normal kid as far as eating."
In addition to changing the way he ate, Niklas also had to learn to check his blood sugar, something he has to do every time he eats.
But Bob said his son has accepted the fact that he has this disease and he has adjusted very well to it.
"Living with diabetes, you are always reminded every single day, no matter what, that your child has diabetes," Bob said. "It never goes away. ... He has done phenomenally with this."
A BRIGHT FUTURE
Nelson said diabetes treatment has come a long way over the years, and there is some great technology available to treat the disease.
He said the Juvenile Diabetes Research Foundation International is working on an artificial pancreas, which uses a glucose sensor and a pump to become a "smart pancreas." Glucose sensors measure the blood sugar and send the information to a computer, which tells the pump how to adjust the patient's insulin.
In addition to finding better ways to treat juvenile diabetes, Nelson said researchers are working on ways to prevent it. They are working on an insulin pill for people who are at risk for developing diabetes.
Nelson said he thinks a cure is coming.
"I think our best chance for the cure is with trying to do what we call islet cell transplantation," he said.
Nelson explained that islets are the cells in the pancreas that make insulin. In a patient with Type 1 diabetes, their islet cells have been destroyed by the immune system. With islet cell transplantation, they are given fresh islet cells that then make their own insulin.
"What I tell parents all the time is that the future is very bright," Nelson said. "We've still got a long way to go, but man, it's a great, great future ahead of us."