Kate Thomas felt alone. The Naperville 9-year-old’s doctor had told her she had asthma, and nobody else in her class at school had it. It made her feel different.
“It was very upsetting to her,” said her mother, Mary Thomas. “I was scared too.”
The school nurse recommended a program at Wheaton’s Central DuPage Health Systems called Open Airways, and that helped a lot, Mary Thomas said. “They gave me a ton of information,” she said, adding that the people at Open Airways introduced Kate to other kids her age who also had asthma. “She doesn’t feel singled out now.”
Open Airways is just one of eight parts of the Asthma Outreach program at the hospital coordinated by staff but supported largely by volunteers.
“It’s unusual for a hospital in a community setting to have this extensive a program,” said Joy Masterton, a nurse and Asthma Outreach coordinator at CDHS, who began organizing the program three years ago.
“We realized that families were needing support groups because they were so uneducated about the disease and they were anxious,” she said.
The hospital started with a program called Huff and Puff, developed by the American Lung Association, that uses puppets to explain asthma to young children.
“The first night we gear it toward parents, the second night we teach children how to monitor their signs and symptoms and how to tell their parents when they’re getting into trouble,” Masterton said.
“It’s a fantastic program,” said Sue Travis of Wheaton, a nurse who volunteers with Huff and Puff. “I give my time because it’s such a valuable program. The children are able to share their thoughts, and when the parents hear them, it is a wonderful form of communication.”
The two puppets Huff and Puff have asthma, so the children identify with them. “Plus, they learn from each other,” Travis said. “They learn how to manage themselves and not be afraid.”
Travis said she reads constantly that asthma cases are increasing. “You can’t pick up a paper without reading that asthma is on the upswing big time,” she said.
According to statistics published by the U.S. Centers for Disease Control and Prevention, Illinois deaths attributed to asthma have grown from 11.8 percent in 1984-89 to 14.5 percent in 1990-95 for whites, and from 45.4 percent to 60.8 percent for blacks for the same years.
“The way we can (change) this is to teach children how to manage and handle themselves at a very young age when they are first diagnosed,” Travis said.
Two other classes, ABC’s of Childhood Asthma and Parents of Asthmatic/Allergic Children Education and Support Group, have been added to help parents address the needs of their children with asthma.
Educating the schools about asthma is another big part of the program.
The hospital instructs nurses of school districts and parents through the Community Education and Open Airways programs, Masterton said. These programs help everyone associated with asthma in the goal to decrease missed school days, reduce hospital visits and give all a sense of control over the illness, she said.
Another new program that will start this fall is Power Breathing. It addresses the needs of teenagers.
“Our teens are a desperate population,” Masterton said, explaining that many teenage students don’t like to go to the nurse’s office to use their inhaler, for example. “We face a danger of (failure to take) medication because sometimes teens have a fear of being different, and the schools as well have faced some challenging aspects in inhaler usage (in relation to drugs).”
Through education offered by programs such as these, some schools, she said, are looking at letting asthma patients keep inhalers in their lockers. This would allow students to keep a symptom from growing into an emergency.
Johanna Rack of Glendale Heights, another volunteer for the program, knows all about emergencies.
“I was asthmatic as a child, and it came back with a vengeance when I was in my early 30s. I ended up in the hospital three or four times a year,” she said.
Rack decided to start a support group for adults and approached her doctor and the American Lung Association. Both gave her a list of people to contact as possible members, and CDHS offered space for meetings for the Adult Asthma Education and Support Group.
“CDHS has really gone out of its way for us,” she said. “They’re always available to help.”
Adults really appreciate having their own group, she said.
“Very few programs have groups for adults. Most are for kids, but adults have a hard time dealing with asthma too,” Rack said. The adult group is also a good place for spouses to come to learn more. And, she said, a child can be frightened by a parent having asthma, so the group gives ideas on how to approach those fears.
“Families go through a lot of stress and strain when one of them has asthma,” Travis said.
A Severe Food Allergy and Anaphylaxis Support Group has also been added to the Asthma Outreach lineup.
“They started out with three or four members, and now they are into the hundreds,” Masterton said, explaining that anaphylaxis is included with the asthma group because, like asthma, it is a life-threatening allergic reaction.
All of these groups are supported by a dedicated group of volunteers. “For us, the volunteers mean everything,” Masterton said.
The volunteers say that having a place to be able to help means a lot to them.
“I find it very rewarding that we can help children to communicate and be educated about asthma,” Travis said.
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For information and referrals to the Asthma Outreach Program at Central DuPage Health Systems and its classes, call 630-260-2685.
