When your child has asthma, there’s no way to tell when his next wheeze, cough, and obligatory puff will be. It may be tomorrow when he plays soccer with his friends. Maybe it’s next week when he visits his grandma and takes a whiff of the pollen-rich flowers in her garden. Or maybe it’s today – for no reason you can think of other than because asthma is what it is.
When your child has asthma, it seems the worrying never ends.
Asthma, after all, is a chronic condition. Although it may get better as your child grows up, there is no guarantee that will happen. Anyway, even if he’s lucky, asthma isn’t bound to go away entirely.
Asthma affects the quality of life of both the child who has it and the loved ones responsible for his care. Even school, taken for granted as a part of growing up, won’t be the same with asthma: children 5 to 17 years old missed about 10.5 million school days in the United States in 2008, according to the 2011 National Health Statistics Reports by the Centers for Disease Control and Prevention (CDC).
It is therefore not surprising that parents and healthcare professionals often join forces to conquer this chronic and complex condition. Forming groups called asthma networks, members enjoy many perks, some of which are enumerated below.
1. Parents of children with asthma hope to decrease suffering and death
Asthma or no asthma, the number one fear of any parent is that his child will come to harm. Parents join asthma networks to keep their kids safe and to alleviate distress. In general, most networks have educational programs that teach parents and their children to cope better with asthma. Skills that can spell the difference between life and death are shared both by healthcare practitioners and other parents in the network.
Providing a better quality of life is also a priority of asthma networks. A total of 15 million years are lost each year to disability due to asthma, according to a 2005 article by Jean Bosquet and colleagues published in the Bulletin of the World Health Organization. This number is similar to the years of disability from schizophrenia or diabetes.
2. Children with asthma are empowered – and so are their families
Yes, going to the doctor regularly helps keep asthma attacks at bay, but self-management plays as big a role in keeping asthma attacks to a minimum, according to Lindsay Kuhn and colleagues in a 2015 article published in The Journal of the American Board of Family Medicine.
Through asthma networks, kids and their families have access to tools and solutions both online and offline, empowering them in their potentially-lifelong battle with asthma. Some families do not even discover these tools until they are introduced to asthma networks.
3. Expenses are minimized in the long run
Asthma takes a heavy toll on families, financially speaking – more so if the condition is diagnosed in the pediatric population. According to the 2014 Global Asthma Report, the burden of asthma is greatest in children approaching adolescence and the elderly.
Many families felt that spending for maintenance meds wasn’t worth it, considering the price tag. However, they actually spent more without proper therapy, a fact the Philippine College of Chest Physicians Council on Asthma emphasized in their 2009 consensus report.
4. Parents and caregivers don’t have to fight asthma alone
It takes a community to raise a child… more so if that child has asthma. It is through community alliances and networks that many issues related to asthma are addressed. For instance, the often-ignored problem of caregiver fatigue may be explored openly and addressed successfully in a network’s sharing sessions.
5. Important information is gathered and used to improve current health practices
Good research involves good sample populations, something that isn’t far from reach with the help of an asthma network. Members of asthma networks can get involved in asthma studies and epidemiologic research by sharing health information related to their kids, such as treatment compliance, symptoms, circumstances surrounding asthma attacks, and other data that can reveal new disease trends.
6. Being an asthma network member raises awareness in the community
There are many other moms and dads out there whose children have asthma yet have no access to tools and resources that make their children’s condition less of a burden. They don’t have partners in the community who can share updates that improve their children’s quality of life.
However, if you were part of an asthma network yourself, you could share with your neighbors how your experience has changed your child’s life, perhaps even yours. You become a beacon of hope, an important source of information to your community.
By being part of an asthma network, you can help spread the word about asthma even as you continue to learn more about it.
Find out if the one you want to join has membership fees. Ask about regularly scheduled activities and chat with old members about their own experiences as well. They might even share with you what they believe are the network’s strengths and weaknesses.
Don’t know where to start looking? Ask your child’s pediatrician or pulmonologist for recommendations.