Each day, Elizabeth Deal wakes up, gets dressed, injects herself with insulin, eats breakfast and pricks her fingertips to check her blood sugar level before getting on with her day.
It has become routine for Elizabeth, 19, who was diagnosed with Type 1 diabetes when she was 14 years old.
"I had to learn to eat less carbs and to eat healthier," she said. "Some foods make my blood sugar higher than others, like pizza and sugary foods like candy and ice cream. But I really miss eating without having to inject insulin."
Elizabeth is one of 215,000 Americans younger than 20 who live with Type 1 diabetes, also called juvenile diabetes or insulin-dependent diabetes.
Type 1 diabetes develops when the body's immune system destroys pancreatic beta cells, the only cells in the body that make the hormone insulin, which regulates blood glucose. To survive, people with Type 1 diabetes must have insulin delivered by injection or a pump.
"Simple things like going out to get something to eat with friends can be difficult," Elizabeth said. "Sometimes I forget about my blood sugar and I eat what my friends are eating. Sometimes that gets me in trouble."
Elizabeth and her parents, Lucinda and Delton Deal, along with a small group of other El Pasoans, are participating in the "Promise to Remember Me" campaign, a national grass-roots effort by the Juvenile Diabetes Research Federation International to develop relationships between the organization's advocates and legislators.
In October, several parents and children with Type 1 diabetes met with El Paso's congressman, Silvestre Reyes, to discuss how they have been affected by diabetes and to urge government support of diabetes research and FDA approval for an artificial pancreas.
The "Promise" campaign "puts a face on the families who are advocating for a cure," said Sandy Peitzer, a diabetes advocacy team chairwoman for the Juvenile Diabetes Research Federation in El Paso. "Advocacy doesn't cost you more than a couple of minutes of time, and it's free. It makes such a big difference in people's lives."
Type 1 diabetes usually strikes children and young adults and accounts for about 5 percent of all diagnosed cases of diabetes. Risk factors for Type 1 diabetes may be autoimmune, genetic or environmental. There is no known way to prevent Type 1 diabetes.
Peitzer became an advocate when her daughter Lisa was diagnosed at 5 years old.
"She is 20 years old now and we still don't have a cure," Peitzer said. "The artificial pancreas is wonderful in the fact that it could really help a person's quality of life. I mean, it's not a cure, but it is something that we need for quality of life until we find a cure."
Researchers are coming closer to developing an "artificial pancreas," a long-sought system of insulin pumps and glucose sensors that deliver insulin to diabetics, mimicking the function of a real pancreas.
Elizabeth Deal, and countless others with Type 1 diabetes, must test their blood sugar multiple times a day, take multiple insulin injections or infusions, and count carbohydrates in everything they eat for the rest of their lives.
The artificial pancreas device, which has been in development for more than three decades, has been tested in hospitals, but the U.S. Food and Drug Administration needs to provide guidance for researchers to test the device in patients at home before it can be put on the market.
"The whole reason that the pancreatic transplant is so important is you have to give kids an opportunity to live life as normal as possible," said Delton Deal, Elizabeth's father. "You hear about Type 2 diabetics losing limbs over years of having the disease. With Type 1 diabetics, you find out when you're crashing, you don't have the opportunity to lose a limb -- your body just quits, and that's the danger."
Elizabeth wasn't the only one affected when her diabetes was diagnosed five years ago. "Every family who has a diabetic in the household has diabetes," Delton Deal said. "That entire family has diabetes in a sense that you become very cognizant of what you buy and what you bring into the house to eat."
Lucinda Deal, Elizabeth's mother, said she became an amateur nutritionist.
"I make sure we eat healthy," she said. "We eat more lean and more green. I don't buy desserts or keep them in the house. We go out and get those things in small amounts. If we have it here, it would be like teasing her."
Elizabeth knows firsthand how dangerous Type 1 diabetes can be if not managed properly.
"I've had four friends in the past two years who have passed away" because of complications of Type 1 diabetes, she said. "I know I need to take better care of myself, but I'm horrible at it."
"It's not easy having to check your blood sugar and taking insulin shots four times a day," she said. "I want to walk around with my friends without having to think about having to stop and checking myself."
Lucinda Deal admires and respects how her daughter is fighting diabetes.
"I couldn't imagine going through what she has," she said. "I couldn't imagine being in her shoes and being a teenager. It's hard to be out in public walking in the mall and going by the pretzel place or the cookie place and having to pull out your monitor and check your blood sugar levels to see if it's OK to eat something."
Lucinda Deal cries often when she thinks about the struggles her daughter faces every day.
"I get very emotional when I talk about diabetes," she said. "We just want her to realize that this disease is not life-threatening if managed correctly. It's almost like your child is drowning and you can't quite pull her out of the water in time."
Christina Morales and Brian Roebuck are parents of a newly diagnosed Type 1 diabetic.
Their 2-year-old daughter, Brianna Roebuck-Morales, was diagnosed at 16 months.
"Unless they find a cure, this is something she is going to have to live with for the rest of her life," Christina Morales said. "We just want to find a cure."
Their baby was hospitalized for a week after she showed signs of constipation, then lethargy and finally uncontrolled vomiting.
When they learned it was because of Type 1 diabetes, "we were extremely shocked," she said. "Nobody in my family has it and nobody in my husband's family has it either, so we were completely shocked. It was awful."
"There was a lot of education about diabetes that went on while she was in the hospital," Morales said.
Brianna's treatment is just like an adult's: She gets four shots of insulin a day, and her fingertips get pricked with a needle to check for glucose levels, also four times a day.
"Everybody tells me it's going to be our new normal and we'll get used to it, but you really don't get used to seeing your baby cry all the time," Morales said. "You have to be on your toes all the time looking out for signs. Because she doesn't talk yet, I don't know when she's feeling bad or just being a 2-year-old."
Victor R. Martinez may be reached at email@example.com; 546-6128.