Diagnosed with severe asthma, Brooke Sander spent the first six years of her life in and out of hospitals.“I had no idea what it was and why my daughter was so sick,” says her mother, Nancy Sander, founder and president of Allergy and Asthma Network Mothers of Asthmatics (AANMA). “It took six years of struggle until we found the information that we needed.”
Brooke started using inhaled corticosteroids in 1987. In this day and age, the word “steroids” carries highly negative connotations. Athletes are fired for using anabolic steroids, so some may recoil at the thought of children taking a drug with the same name. But the two are actually quite different. Inhaled corticosteroids supplement the hormone cortisol, which the body produces naturally. In someone with asthma, cortisol, which helps heal inflammation in the lungs, gets depleted. Anabolic steroids, by contrast, are not replacing a hormone the body needs.
Inhaled steroids treat the inflammation that underlies asthma attacks. Bronchodilators, the other common asthma treatment, treat the symptoms—the coughing, choking and shortness of breath that occur when the muscles that keep the airways open go into spasm. Sander calls this the “noisy part” of asthma, while the inflammation is quiet but potentially deadly. Patients take an inhaled steroid every day to prevent an asthma attack from occurring.
“It’s very subtle,” Sander says of the inflammation. “It’s just like a smoldering campfire. All it takes is a trigger to set the fire off. So Brooke smothers the campfire completely by taking an inhaled steroid every day. … She has the ability to intercept symptoms before they become serious.”
You can’t feel steroids working like you can feel a bronchodilator opening your airways. But for people who need it, taking an inhaled steroid every day can greatly reduce the chance of a severe asthma attack. An asthma attack is much easier—and less painful—to prevent than to cure. “Once she has an attack, if she tries to tough it out, the asthma is going to win. It’s like trying to fight a forest fire with a bucket of water. So she has to stop attacks when they’re matchstick size,” Sander says.
The National Institutes of Health recommend that patients with mild, infrequent asthma—people who might have attacks once or twice a year—use bronchodilators. Those with mild chronic asthma—who might have attacks once or twice a week—may want to use inhaled steroids. Fifteen people die from asthma every day in the United States. Only five of those people have severe asthma; another five have moderate cases and another five have mild cases. “Mild asthma is not insurance that you’re not going to have a fatal asthma attack,” Sander says.
There are some risks associated with inhaled steroids. Most notably, it can reduce children’s growth rate. But a recent NIH study showed that the reduction was only temporary; after a year, the children caught up. Another study showed that premenopausal women who used inhaled steroids have more bone loss than those who don’t, increasing their risk of fracture.
Though asthma is increasingly common in the United States and 5 million children have the disease, many people are poorly educated about it. That’s why Sander founded AANMA in 1985. Though the information was out there when her daughter was born, it took her six years to find it. So she began distributing a newsletter about the condition to pediatric offices. The organization took off, and now she has 10 full-time and 4 part-time employees. AANMA distributes a monthly newsletter, a quarterly magazine, and hosts Breatherville, an innovative, educational Web site. They host an asthma awareness day every year, and lobby for laws that protect kids with asthma.
Many states, Sander says, do not have laws protecting a child’s right to carry an inhaler, and in some areas there is only one school nurse for every 2,000 students. This can be dangerous for kids with asthma, which Sander learned the hard way. Her local public school would have required her to leave Brooke's medicine in a locked cabinet, so she was forced to put her daughter in private school for two years, even though she had four kids and not much money. Eventually, she convinced the school to let Brooke carry an inhaler.
But this did not eliminate Brooke’s risk. Her first year back in school, she had a severe attack, and administrators could not recognize the symptoms. They could not reach Sander by phone, so Brooke just sat in the office for several hours while her airways became more constricted. Sander arrived home in time to meet the bus, but Brooke was not on it. She called the school, heard what happened, and immediately drove to the office to get her daughter, whose fingernails were turning blue. Sander took Brooke to the emergency room, and two hours later Brooke’s entire adrenal system shut down.
“She nearly died as a result of that attack,” Sander says. The problem, she says, is that “people don’t perceive asthma as being serious. … They wanted to do the right thing but they just didn’t perceive her needs properly.” After the near-fatal attack, the school gave Brooke more control over her treatment, and learned how to recognize some asthma symptoms.
The incident proves that knowledge can prevent deadly attacks. “The more you know about asthma, the more power you have over it,” Sander says.