With November being Diabetes Awareness Month, three area youth share their stories on what it is like being a child and living with the disease.
Elise Erdmann, 15, was diagnosed with diabetes at the age of 11.
“I didn’t know what diabetes was,” said Elise. “I didn’t understand why I had to take a shot before every meal and why I had to eat all of my food on my plate. Diabetes has changed my life in many ways.”
Gracie Johnson, 11, agrees that it has changed her life as well.
Diagnosed at the age of 10, diabetes is still pretty new to her.
“I was really scared,” said Gracie. “I didn’t know what that meant. I am more aware of how I eat now.”
For 11-year-old Autumn Wennesberg, diabetes is nothing new. In fact, she does not even remember life without it.
“I was 17 months old when I was diagnosed,” said Autumn. “It is really hard to deal with counting carbs, then doing the math to figure out what your dose of insulin should be, day after day, after day.”
All three girls have Type 1 Diabetes.
According to Joy Kobiske, family nurse practitioner and certified diabetes educator at Theda Care Physicians, Type 1 Diabetes is a condition where the pancreas completely, or nearly completely, stops the production of insulin.
“The cause of this is not known and may have multiple causes such as an inherited risk, as diabetes runs more often in some families than others, or possibly from a viral infection that attacks the pancreatic cells,” she said.
Type 1 Diabetes is very manageable through proper diet, exercise and insulin injections.
“Because the pancreas can no longer provide insulin to meet the body’s demands, insulin must be given by injection to help normalize blood sugars,” said Kobiske.
Autumn takes four shots.
“It doesn’t hurt anymore,” said Autumn. “I am used to it now.”
Gracie takes six shots a day to manage her diabetes.
“I feel different than other kids because I always have to leave my classroom and check my numbers and always have little holes in my fingers and my arms,” she said. “Sometimes I have a bruise on my arm or belly and people ask what happened.”
Elise manages her diabetes with an insulin pump.
“My daily routine is simpler now that I have had the insulin pump,” said Elise. “Basically I just wake up and take my blood sugar before every meal, I count the amount of carb intake that I am getting from the meal and enter the carb amount into my pump. With insulin shots, I would have to do math to figure out how much insulin I take, but now the insulin pump does the math for me.”
On average the girls do approximately six blood tests a day to monitor their blood sugar levels.
All the girls agree that people need more understanding of the disease.
“I wish people would understand that I am able to still eat everything that they can even if it is high in sugar or carbs,” said Elise. “I just have to take a lot of insulin for those foods.”
“I wish people understood it is a serious thing to deal with everyday,” said Gracie. “Not something for people to joke around with.”
Autumn believes that education is the key.
“I would like people to take more time to learn about diabetes,” she said. “No one should ever be afraid to be around me. A lot of people ask me if I am contagious.”
Elise is quick to point out how her best friend Amie Smith has become her companion in diabetes.
“Amie is always looking out for me,” she said.
Amie has joined Elise at doctor’s appointments to educate herself.
“I knew it was important to learn about diabetes from the second I got the call that Elise got flown to the Children’s Hospital in Neenah,” said Amie. “It is a very serious disease that almost took my best friend’s life. I wanted to be sure I could help her at any time.”
Amie knows that at times diabetes can be a struggle for her friend.
“Seeing her get shots several times a day along with pricking her fingers was one of the saddest things I have ever seen,” said Amie. “I admire Elise in many ways for what she’s gone through and how well she has handled it.”
Although the families of the girls are their biggest supporters, they too have faced struggles.
“This is the hardest thing that I have gone through,” said Tammy Johnson.
“I cried for 3-4 days after the diagnosis” added Bibi Erdmann. “We wanted to know how and why she got Type 1 Diabetes, but no one was able to answer that.”
Chris Wennesberg recalled getting the phone call at work from his wife Jessica.
“She told me Autumn would not stop crying and was lethargic. So I ran home and we took her to the hospital in Waupaca, where she was diagnosed with diabetes,” he said. “From there we had to take her to Milwaukee.”
Wennesberg stated that the beginning was the most difficult part.
“When we got to Milwaukee, they tried to put a main line going into an artery,” he said. “She got stuck 13 times. Having to sit there and watch, and hearing her scream, I told the guy he better not miss again, because I wouldn’t.”
Kobiske offered words of advice to parents of diabetic children.
“Diabetes can be challenging, but with support and encouragement kids do very well,” she said. “Sharing the responsibilities lightens the burden for everyone. It’s important to have a knowledgeable healthcare team to stay in close contact with. It’s also very important to recognize when things aren’t going well and when your child or family might need some help getting back on track.”
“It has definitely brought my wife and me closer together,” said Chris. “You really have to work as a team.”
Currently there is no cure for diabetes.
Diabetics can, however, lead a normal lifestyle.
“Having diabetes does not keep people from being active and involved in all aspects of life,” said Kobiske. “Many professional sports figures, celebrities, business executives and normal folks have Type 1 Diabetes and continue to lead normal, very productive lives.”
Kobiske encourages patients to learn as much as you can about the disease.
“Be involved in your care as much as you can,” she said. “Get in a good routine and think of it just like you do normal activities like brushing your teeth and doing daily hygiene. Test your blood sugars often and know how to respond to the numbers you get.”
The parents also offer advice to others coping with the disease as well.
“Be patient with your child,” said Chris. “Together you will get through it.”
“Take it day by day,” said Tammy. “Don’t blame or take guilt upon yourself.”
Elise, Autumn and Gracie seem to take in stride the daily finger, pokes, blood tests and shots that they endure as a normal part of their routine.
They are no longer angry about the disease.
“It is something that I have accepted and will be a part of me until there is a cure,” said Elise. “Diabetes was just another word to me.”
“I used to be mad at diabetes,” said Autumn. “But it is not a big deal anymore.”
All the families look to the future and never give up hope for a cure.