Changing lives through research

Watch how work at Indiana University is impacting the lives of Hoosiers across the state.

A different type of summer camp

Description of the following video:

[Music]

[Words appear: 29.1 million people are living with diabetes; 208,000 are younger than 2]

[Words appear: Indiana University is partnering with the American Diabetes Association and Camp John Warvel to ease the lives of children and their families living with Type 1 Diabetes]

[Words appear: Changing lives through research, IU School of Medicine]

[Words appear: Camp John Warvel]

[Words appear: North Webster, Indiana]

Marcee ReFour speaks: He had just been acting different, drinking a lot of water. He was still in a pull-up, but he was wetting the bed a lot.

Stina Wedlock speaks: When I went to the day care to pick her up, I saw her use the water fountain, but she was standing there and drinking and drinking and drinking.

Marcee speaks: We called the pediatrician the next day.

Stina speaks: It was 20 months when she was diagnosed.

Marcee speaks: He was diagnosed at three.

[Words appear: Frederick and Marcee, Parents of Landon ReFour]

Frederick speaks: To me, it was just a life change. How was it going to affect us? How it was going to affect him down the road. Figuring out ways to not have any limitations on him.

[Words appear: Carol Dixon, American Diabetes Association]

Carol speaks: Parents are afraid to let their kids go stay overnight somewhere. Because they don't know if the other people, the other family, understand enough on how to manage that child's diabetes.

Marcee speaks: We were like super nervous because he's never been away from us, not even for one night.

Stina speaks: She had not been to a camp before. She had spent the night away from us with the grandparents, but that was about it. Since she was two years old we've been getting up at midnight every night and checking blood sugars. It's a week where our vigilance level can come down a little bit.

Carol speaks: Often kids are the only one in their school that has diabetes, they don't know anyone else.

Stina speaks: She needed to see that other kids were doing this, people her age. So the camp was really helpful for that.

[Words appear: Landon ReFour, Camper]

Landon speaks: Sometimes I think that I'm the only person in the world who has diabetes, but I'm not.

[Video: Timelapse of sunset at Camp John Warvel]

Carol speaks: When the children are here at camp, they learn how to properly manage their diabetes through insulin dosing. A lot of kids, it's the first time they've ever given their own injection before. And so they leave and they're like, mom, dad, guess what? I gave myself my own injection for the first time. And they get very excited about that.

Marcee speaks: All these other kids that are type 1 just like him. If he's having trouble with something, one of them might be well hey, you should do this.

[Words appear: Madelyn Grau, Camper]

Madelyn speaks: To realize there's other people around me who have it, and see the older kids dealing with it. Now seeing the younger kids, watching them, kind of looking back.

Marcee speaks: Knowing that he's being taking care of and we don't have to worry about it.

Stina speaks: That's priceless, we like to say we're gonna take Madelyn to camp and she's gonna be at camp with her doctor.

Carol speaks: Dr. Linda DiMeglio and Dr. Todd Nebesio are our two co-medical directors for this camp. Dr. DiMeglio has been with us the longest, she's brought TrialNet here.

Linda DiMeglio speaks: So we are part of an international program called Type 1 Diabetes TrialNet that screen first and second degree family members of people with type 1 diabetes with a single blood test to see if those people have the antibodies that put them at risk of type 1 diabetes.

[Words appear: Dr. Linda DiMeglio, Professor of pediatrics, IU School of Medicine]

Linda speaks: Right now it's done by a blood draw. Hopefully, in the next few months, it'll start to be done by a finger stick testing to see if those people have the antibodies that put them at risk of type 1 diabetes. If those people have the antibodies that put them at risk, the program involves having them then be very closely monitored for progression to type 1 diabetes, as well as potentially enrolling into studies to prevent or delay the onset of type 1 diabetes. We bring our research to the camp setting to be where the patients and potential participants are. It's difficult for parents to get time off from work. It's difficult for siblings to get out of school. And so it's a nice opportunity for them to come at the same time as they're dropping off a sibling at camp.

Stina speaks: We do participate in TrialNet, both my husband and I got screened. When Madelyn was three her baby brother was born, Ben. When he was a year old we took him in to start getting screened and he's gotten screened every year.

Linda speaks: Some of what we do with the screening, knowing that 95% of the people that we test are gonna be negative, gives people peace of mind that their child is not gonna develop diabetes. On the other hand, if they are one of the 5% of people that are positive, we can really drill down, get a doctor for that child, and come up with a plan and start monitoring. And ease into the disease as opposed to having that kind of precipitous diagnosis all at once. Whenever I have a child that's interested in a research study, I will ask them why they chose to do the study. I find often the child says that they wanna participate in the study because they want to change the care of diabetes for kids in the future and so that the field will continue to change and move forward.

Frederick speaks: So once he came to camp and he came back home, you could tell that he had a better understanding of who he was and knowing that he wasn't alone. So it allowed him to go into the next school year with a "This is what I am, and I have embraced it" type of attitude.

Stina speaks: So we've tried to make it a very normal thing. We've tried to tell her that, really, she can do anything she wants. She just has these few extra things to do in life. She has to check her blood sugar, she has to give herself insulin. But aside from that, if she keeps on top of it, the sky's the limit.

[Music]

[Video: The Indiana University trident appears]

[Words appear: Indiana University, iu.edu]

[Words appear: For more information about Indianapolis Type 1 Diabetes Screening and Research, Dr. DiMeglio’s Research Team, pedsdiab@iupui.edu, 317-278-8879, Type 1 Diabetes TrialNet, www.trialnet.org]

[End of transcript]

IU School of Medicine researchers are helping children with diabetes attend summer camp without worrying about treatment. They also use the camp to screen family members for Type 1 diabetes and help improve understanding of the disease.​