Childhood diabetes - A young person speaks about her experience with the disease

DENVER - A person with diabetes usually develops it in adulthood, when - devastating as the disease;s onset may be - he or she can understand what is happening.

In contrast, Sophie Red Earth, now 8, encountered diabetes at age 2 as, sirens screaming, an ambulance rushed her to the emergency room just in time to save her life.

She began a regimen of at least five daily finger-pricks and insulin injections and, at age 5, became one of the youngest children to use an insulin pump. She still has all the finger (or toe) pricks, but now has only one insertion, sometimes painful, of her pump every three days to keep the proper balance of insulin in her system.

Red Earth, Sisseton-Wahpeton/Pawnee/Oto, enjoys school, her friends, Jingle Dress dancing and swimming; and she looks forward to the third grade. With the unflappable buoyancy of childhood, she chatters about every imaginable subject - except diabetes.

With her mother's permission, Indian Country Today asked Red Earth about it.

Indian Country Today: Sophie, you like to talk about a lot of things. What are the things you like to talk about the most?

Sophie Red Earth: Funny things that happen to me. Or I talk to my friends about how I feel about my other friends. I guess that's gossip [laughs]. Nice days and fun days.

ICT: Are there things you don't like to talk about?

Red Earth: Boring stuff, like being sick.

ICT: Is diabetes one of the things you don't like to talk about?

Red Earth: A little bit yes and a little bit no. Like - sometimes I do because it doesn't really bother me. Sometimes when I'm in a bad mood - nah.

ICT: Are there things you can't do because you have diabetes?

Red Earth: Not things like running or swimming or anything. But sometimes when the day's almost over at school and I'm low [low blood sugar] I have to sit and be quiet and miss fun, like a game.

ICT: What is the hardest thing for you about having diabetes?

Red Earth: When I have to eat at school, I have to go to the clinic every day and check myself [blood glucose level], and when I go to the lunch room everyone I know is through with the [lunch] line, and I'm shy. Or sometimes when I'm outside teachers or other people see my pump and they think it's an iPod I'm not supposed to have at school.

ICT: What do you want other kids and other people to know about diabetes?

Red Earth: That it's a very, very bad disease because, well, it stops your pancreas and you have to do shots or have a pump and that's kind of annoying.

ICT: What have you learned about taking care of yourself with diabetes?

Red Earth: I've learned that you have to take care of yourself to live, because I have to change my [pump] sets and I have to check [needle-stick] myself every time I eat or exercise. I have to eat healthy.

ICT: Anything else?

Red Earth: Diabetes is something that - sometimes I don't like it and I want it to go away. I hope they find a cure.

Red Earth's disease is Type 1 diabetes. It has been called juvenile-onset diabetes because it usually - though by no means always - strikes children. It differs from Type 2 in that all the islet cells in the pancreas are destroyed and the victim must have an artificial supply of insulin or death can follow within about three days.

Like others with Type 1 diabetes, she may be at higher risk of such secondary complications as vision loss, kidney disease, circulatory disorders requiring amputation, heart attack and other serious conditions. So careful, lifelong management is critical.

Diet and exercise are beneficial for everyone, but they do not erase insulin dependency in Type 1 diabetes.

Tribal nations are taking an active role in diabetes research, prevention and management, some of them with specific attention to children. For example, the Chickasaw Nation is partnering with the Children's Medical Research Institute to establish the Chickasaw Nation Endowed Research Chair in Pediatric Diabetes; and the tribe's governor, Bill Anoatubby, has been active in supporting the Juvenile Diabetes Research Foundation and the tribe's new Diabetes Care Center, which provides for juvenile endocrinology.

Some information about young people with diabetes:

"While many youngsters have Type 1 diabetes, increasing numbers are developing Type 2, which can be helped by diet and exercise.

"The IHS reports a Type 1 incidence of more than 1 in 1,000 in the age group 0 - 14, according to Internet data.

"IHS notes Type 2 rates ranging from 4.5 percent to 22.3 percent per 1,000 in older teens.