Young Diné on front lines of battling, curing Type I diabetes

By Alysa Landry
Special to the Times

WASHINGTON, July 4, 2013

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(Courtesy photo)

Fallon Blackbull will join 150 other young people from across the country in Washington, D.C. as the group will urge lawmakers on Capitol Hill to continue funding Type 1 diabetes research.

Thirteen-year-old Fallon Blackbull has a busy schedule.

The incoming freshman at Rebohoth Christian School splits her time among varsity track, soccer and 4-H activities, including competitive archery and showing lambs in the county fair.

But Blackbull's daily routine also includes waking up at 2 a.m. and 5 a.m. to check her blood sugar.

Blackbull, of Hosta Butte, N.M., was 10 years old when she learned she had Type 1 diabetes and that she'd be pricking her finger a dozen times a day for the rest of her life.

"I hate living with diabetes," she said during a phone interview. "It's a lot of work, a lot of extra things put into my day."

Blackbull on Monday will join 150 other young people from across the country in Washington, D.C., where they will urge lawmakers on Capitol Hill to continue funding Type 1 diabetes research. It's part of the Juvenile Diabetes Research Foundation's Children's Congress, an event that happens every other year and allows children and teens with Type 1 diabetes to interface directly with senators and representatives.

This year's Children's Congress also includes young delegates from Australia, Canada, Denmark, Israel, the Netherlands and the United Kingdom, said Cindy Adams, executive director of the Juvenile Diabetes Research Foundation.

"We're asking Congress for support so we can find a cure," Adams said. "Our goal is to cure, treat and prevent Type 1 diabetes."

Type 1 diabetes, previously known as juvenile diabetes, usually is diagnosed in children and young adults. Only 5 percent of people with diabetes have this form, which occurs when the body does not produce insulin, or the hormone needed to convert sugar into energy.

According to the American Diabetes Association, nearly 26 million people in the United States have some form of diabetes. That's about 8 percent of the total population.

Type 1 diabetes is found infrequently in Navajo youths under the age of 10, but the prevalence is higher among older teens, the American Diabetes Association reported. Navajo youths ages 15 to 19 develop Type 1 diabetes at the rate of 1 in 2,500 annually.

A much higher number of Navajo youths - and adults - have Type 2 diabetes, which occurs when the body does not produce enough insulin or the cells ignore the insulin that is produced.

Children's Congress addresses Type 1 diabetes only, and federal lawmakers since 1997 have approved research funding at the rate of $150 million per year, Adams said. The first Children's Congress was in 1999, and it was inspired by a 9-year-old boy from Massachusetts, who wanted to share his story with lawmakers.

"Children's Congress is the largest media and grassroots event to push to find a cure for Type 1 diabetes," Adams said. "We're looking for a cure and for treatments that make life easier. All of that comes as a result of research."

For example, Blackbull recently participated in a clinical trial of an artificial pancreas, a device that automatically tests blood sugar every five minutes and adjusts insulin levels.

"It's a breakthrough because it helps keep diabetics in a healthy range," Adams said. "It helps them avoid the high highs and the low lows that are dangerous."

As a Navajo teen with Type 1 diabetes, Blackbull also has the opportunity to speak for all Natives who suffer from the condition. She wants to advocate specifically for children who rely on Indian Health Service for treatment.

"Diabetes therapy can be limited on the reservations," said Blackbull's mother, Tiffany Blackbull. "While we're in Washington, we think it's important to focus on making sure kids on the reservation have the same opportunities as kids with private insurance. It's a big responsibility that the message from Indian country is shared in Washington."

Diabetes has changed Blackbull's life. She remembers the exact day she learned of her diagnosis - Aug. 6, 2010.

After experiencing sudden weight loss, Blackbull went to a doctor who told her to eat more carbohydrates. When she continued to lose weight, her mother took her to the hospital in Gallup, where she was immediately airlifted to Albuquerque and admitted to the Intensive Care Unit for nine days.

"I was really scared," Blackbull said. "I didn't know what was going on. When I got to the hospital, it was discovered that I had diabetes and that I was in diabetic ketoacidosis."

Blackbull was at risk of diabetic seizure, her mother said.

"Had we waited 72 more hours, it would have killed her," he mother said.

Now Blackbull is on the front line of the battle to find a cure. She will meet next week with lawmakers and share her story.

"I test 10-12 times a day," she said. "I measure everything I eat. I get calluses from where my fingers are being pricked. I want to tell Congress to keep supporting diabetes research."

Blackbull was one of 150 youths selected for Children's Congress from a pool of more than 1,500 applications, Adams said. Many children with Type 1 are diagnosed before age 3. Children who are older when they are diagnosed can face more difficulty, she said.

"We see a lot of kids diagnosed at 18 months, at 2 or 3 years old," she said. "They grow up with diabetes, so pricking their fingers eight or 10 times a day is the norm. If the child is 10, 11 or 12 when they are diagnosed, it's more challenging because they remember what it was like without it."

Type 1 diabetes also occurs in adults, Adams said. People of all ages have been diagnosed with it.

Regardless of age, those who live with it hope for a cure, Blackbull said.

"I would like to live a normal life," she said. "That means not having to test every day and not having to wear a pump, and not worrying about what I eat."