Michelle didn’t recognize the symptoms of Type 1 diabetes in her young son. So she became an advocate to educate parents and pediatricians on the warning signs.
Excessive thirst, fatigue, mood swings, and low energy.
Seven-year-old Jonathan Berman had been experiencing these symptoms, but his mother, Michelle, could not determine their cause. Then one day Jonathan fainted, which prompted an appointment with his pediatrician in Philadelphia.
“Ask your doctor, could this be Type 1 diabetes?”
Michelle thought Jonathan’s symptoms were related to his blood pressure, but she soon learned he had Type 1 diabetes. He had fainted as a result of severe dehydration.
Type 1 diabetes is an autoimmune disease that affects the pancreas’ ability to produce insulin. It can occur in children and adults without any family history, one of the many facts that surprised Michelle.
If she had waited longer to find out what was wrong, Jonathan could have died from diabetic ketoacidosis (DKA), a diabetes complication that is life-threatening when undiagnosed or untreated.
Michelle’s was inspired to become a national parent advocate for Type 1 diabetes to educate parents and pediatricians on the warning signs and symptoms. Type 1 diabetes is often misdiagnosed as the flu, growth spurts, or a urinary tract infection.
A Type 1 diabetes awareness campaign
After experiencing the effects of an unexpected Type 1 diagnosis in her own family, Michelle and fellow parent advocate Deborah Healy partnered with the Pennsylvania Chapter of the American Academy of Pediatrics (PA AAP) and Beyond Type 1, a diabetes philanthropic organization with a mission to educate, advocate, and support the path to a cure. Beyond Type 1 was co-founded by singer/actor Nick Jonas, who was diagnosed with Type 1 diabetes at 13.
The partnership launched a Type 1 diabetes awareness campaign in November 2016 during National Diabetes Awareness Month. It focused on encouraging pediatricians and physicians to educate parents. The campaign is fully funded by Beyond Type 1.
Every children’s hospital and six pediatric endocrinologists in Pennsylvania, including Penn State Children’s Hospital, Lehigh Valley Health Network, Children’s Hospital of Pittsburgh of UPMC, St. Christopher’s Hospital for Children, The Children’s Hospital of Philadelphia, and Geisinger Medical Center, supported or endorsed the campaign.
The campaign mailing to Pennsylvania pediatric offices consists of Type 1 warning signs posters in English and Spanish, and a patient handout. Beyond Type 1 also provides links to digital educational posters featuring warning signs of Type 1 diabetes. To download educational posters and other resources to share with parents, pediatricians can visit beyondtype1.org/pennsylvania.
Michelle says that through the campaign she hopes parents begin to ask their doctors, “Could this be Type 1 diabetes?”
The Pennsylvania Chapter of the American Academy of Pediatrics was the first in the country to partner with families and Beyond Type 1 to raise Type 1 diabetes awareness.
After witnessing the campaign’s success in PA, Michelle and Deborah teamed with Beyond Type 1 as national parent advocates working directly with AAP chapters across the U.S. Their added mission is to connect with parent advocates in each state to champion the BT1 awareness campaign with their state AAP chapters and share personalized stories offering additional early-warning-signs education for families.
The campaign also has launched in New Jersey, Delaware, Massachusetts, Ohio, and Texas. Launches are underway in Florida, Arkansas, and North Carolina, with a goal of being nationwide by the end of 2017.
Beyond Type 1 has delivered campaign mailings to more than 15,000 pediatric offices nationwide since November. With continued effort, the hope is to limit the estimated 41 percent of children who are in a state of DKA at the time of a Type 1 diagnosis.
Ultimately, this campaign is meant to prompt early awareness to lessen the incidence of DKA at diagnosis. The signs of Type 1 diabetes were there, and knowledge could have prevented Jonathan from risk of DKA.
“Early diagnosis is key when it comes to Type 1 diabetes. No child or adult should have to die from a Type 1 diagnosis,” Michelle said.
Now 16, Jonathan has learned to manage his disease through continuous monitoring of his blood sugar levels and wearing an insulin pump and glucose monitor.
“Knowing the warning signs of Type 1 diabetes and DKA can help save lives. Type 1 diabetes is a 24-hour, seven-days-a-week disease. It does not limit one’s ability in life. It’s just a different way to manage living,” Michelle says.
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