11-year-old copes with chronic disease
By Holly Neumann
At age 11, Libby Maus is learning to live with a chronic disease.
She has diabetes, which makes it hard for her body to use the sugar in the blood stream as a source of energy. Sugar mounts up in the blood stream which leads to health problems.
When symptoms occur, the most common are frequent thirst and frequent urination as the body is trying to rid itself of the high levels of sugar in the blood stream.
“Fatigue and weight loss from inability to use sugar as an energy source, wounds that don’t heal and infections can also occur,” said Joy Kobiske, family nurse practitioner and certified diabetes educator for ThedaCare Physicians. “Because diabetes can affect so many different parts of the body, vision changes, burning and tingling in the feet and skin changes can also be noticed.”
Insulin is a hormone made in the pancreas and plays a vital role in maintaining normal levels of sugar in the blood. Defects in the pancreas lead to the development of diabetes.
Maus was diagnosed with Type 1 diabetes when she was 10 years old.
“Libby was sluggish, had no energy and wanted to lay around all the time,” said her mom Julie Maus.
“I just didn’t feel good at all,” added Libby. “When they first told me I had diabetes, I wasn’t scared because I had no idea what that meant.”
Type 1 diabetes happens when the body is making little or no insulin.
“It often occurs suddenly in people less than 30 years of age and symptoms can be intense,” said Kobiske.
Insulin is needed to restore function and must be taken by injection or through an insulin pump.
According to Libby, she “freaked out” when she learned that she would have to take daily shots.
“I cried,” she said. “I had to take a shot at breakfast, lunch, dinner, nighttime, when I had snacks, when my blood sugar was high. I was taking at least six shots a day.”
Julie noted that it took Libby about a month before she could do her shots on her own.
“Now she is doing great,” she said.
Even Libby’s younger sister Maggie agrees.
“I am so proud of her. She is so brave,” said Maggie. “I never see her cry about it anymore.”
The family agrees that in the beginning it is completely overwhelming.
“It’s the fear of the unknown that really puts knots in your stomach,” Julie said. “I could not believe that that was going to be her life. You just don’t know what can happen. And learning what to do and how to use everything, it was a lot to deal with.”
Libby now has to remember to carry her diabetic supplies with her wherever she goes and adjust to being the only diabetic in her school.
“At first I was nervous about taking diabetes to school with me,” Libby said. “My Mom and Dad were not with me all the time and I worried about how other people would take care of me if something happens.”
Libby said her classmates had a lot of questions at first.
“Some kids thought I was faking it, which really made me mad,” she said. “Now they are used to it.”
The first nine months of dealing with the disease there were some lifestyle adjustments.
“We had to be careful for things like sleepovers and birthday parties,” said Julie. “We were leery about sending her anywhere until we understood completely what to do. Giving the shots was the easy part. Figuring out how her body is going to react to it is the hard part.”
Diabetes is treatable and people living with the disease can live normal lives.
“Sometimes with Type 2, all that is needed is management of diet and improving exercise activities and weight loss in overweight individuals to control blood sugar,” Kobiske said. “There are also many different medications now with fewer side effects than in the past to help us treat diabetes effectively.”
She noted that for those with Type 1 diabetes, insulin delivery has also become more sophisticated. Pen devices and tiny needles, as well as patches help avoid frequent needle pokes.
“Insulin pumps allow for programmed delivery of tiny amounts of insulin frequently to more closely mimic the pancreas, with a cannula into the skin which can go days without changing,” she said.
Testing blood sugars has also become much simpler and can be done with continuous monitors that check sugars up to every two minutes.
“There is also technology that allows for no-poke blood sugar monitoring,” Kobiske said. “Artificial pancreas technology is rapidly improving and allows insulin pumps and continuous glucose monitors to communicate and perform insulin delivery without human intervention.”
New products and technology are being introduced at a rapid rate in history and will change the way patients manage diabetes in the future and improve the blood sugar control.
For Libby, life has been made much easier the past few months as she is now using an insulin pump and continuous glucose monitor.
“I am glad I have them,” Libby said. “It eliminates some blood bests and the shots and has made diabetes easier now. I just push a couple of buttons and it is done.”
Kobiske added the importance of good control.
“Elevated blood sugars beyond the normal range is associated with many health risks including heart disease, kidney and eye damage, foot and circulatory problems, nerve damage, dementia risk and depression,” she said. “With good control these problems are known to be reduced.”
Developing diabetes is not something that people can generally avoid.
“It isn’t the fault of the person with diabetes,” she said. “Many factors play into why people develop a disease. Heredity, environment, stress, age, race and personal history all play a part. Have regular check-ups, know your risk factors, listen to your body and live a healthy lifestyle to minimize risk.”
Julie reminds everyone that even though diabetes may look easy there is a lot going on that people do not realize.
“Be aware that not only us, but other families dealing with diabetes are dealing with things that people will not understand,” she said. “Sure, everyone worries about their kids, but this brings it to a whole new level.”
The family has also been involved in Walking for A Cure for the disease.
“This is really important,” said Julie. “The doctor has told us that Libby will see a cure in her lifetime.”
“I sure hope so,” said Libby. “Because sometimes, I just want to scream, ‘stupid diabetes.’”
For now, Libby offers this advice to others.
“It is OK to be different,” she said. “You can still be yourself. Everyone should be treated the same.”
As for what lies ahead for Libby, the future is yet to be seen.
“I don’t worry too much,” she said. “I know my family and I have got this under control.”