Joan Benedetto of Batavia is finding powers within herself she never knew she had. Ever since her son, Jayce, was diagnosed with Type 1 diabetes, she has become a tireless advocate -- and not just to raise awareness.
In part, because of her activism, more than 2,000 pediatric practices across the state now are showcasing flyers about how to recognize the subtle signs of the disease -- often masked by flu or cold symptoms -- before it is too late.
Warning signs of Type 1 diabetesThe following signs of Type 1 diabetes are often mistaken for stomach flu or virus, strep throat, growth spurt or urinary tract infection. Ask your doctor if this could be Type 1 diabetes.
• Excessive thirst
• Frequent urination
• Bedwetting or heavy diaper
• Vision change and headaches
• Rapid weight loss
• Increased appetite
• Irritability or mood changes
• Fatigue and weakness
• Stomach pain, nausea, vomiting
• Fruity breath odor
• Rapid, heavy breathing
Source: Beyond Type 1
Benedetto reached the attention of Beyond Type 1, an organization launched three years ago by a group that includes singer Nick Jonas. Among its multiple initiatives is a state by state campaign to educate families about these subtle signs.
"This campaign is designed to raise awareness of the signs and symptoms of Type 1 among pediatricians, their staff and their patients -- especially during flu season," says Sarah Lucas, co-founder and CEO of the organization.
"At Beyond Type 1, we are working on educating the general public about the warning signs -- it might be the flu or it might be something that could kill you," Lucas adds. "Just ask the medical professional to double check."
That was the case with Benedetto's son when he was diagnosed. He was 18 months old when they rushed him to the emergency room for what they thought was an upper respiratory infection. His breathing had become labored and he started vomiting.
It turned out that Jayce was experiencing diabetic ketoacidosis (DKA), which is a serious and often life-threatening complication of Type 1 diabetes. In this country, 42 percent of people diagnosed with Type 1 are in DKA, Lucas says, which indicates that the early warning signs have often been missed.
She explains that when the pancreas is damaged and can no longer produce insulin, sugar builds up in the bloodstream and can lead to toxicity in the body, which can be deadly when missed.
When Jayce was diagnosed, Benedetto and her husband, Ray, racked their brains about the signs that they missed.
"He was a healthy child, but he didn't gain any weight between 15 and 18 months -- but he had grown two inches," Benedetto says, "and he had a great appetite."
It was her involvement in the online diabetes community that led her to Beyond Type 1 and its multipronged approach to change what it means to live with the disease -- through social media -- and continue to fund research for a cure.
She now is one of two parent advocates for the organization in Illinois. After working for months to get pediatricians to educate their families about diabetes -- and diabetic ketoacidosis -- Benedetto now is taking her campaign to the schools.
At Immanuel Lutheran School in Batavia, where Jayce attends kindergarten, Benedetto has worked to educate teachers and staff, and by extension, the 300 families whose children attend the school.
Just last week, Jayce posed with Principal Donna Laughlin in front of an informational poster they displayed near the school's main entrance.
"She has worked closely with our teachers on behalf of her son, and she has provided helpful training and materials to our teachers," Laughlin says. "We are working together on getting these materials to our school families, as well."
Next up, Benedetto is working with Lutheran schools throughout the state to post the information, and she hopes to advance into her local school district, as well.
"We've got to do something to prevent other families from possibly losing other children," Benedetto says. "We're passionate about saving the children who come after ours. We want to pay it forward."