“I had Brooke in 1978, and almost from the first moments of life, I knew something was drastically wrong,” said Nancy Sander of Fairfax, Va. “It would be six years of Brooke living in and out of hospitals, having so many tests, and really fighting for her life before we found the tipping point.” As an infant, Brooke’s chest heaved and rattled each time she took a breath, she vomited after she was breastfed, and she needed a breathing treatment in the middle of each night. As she grew older, Brooke was so familiar with nearby hospitals that she knew how to roll her IV pole down to the pediatric kitchen, push a chair up to the refrigerator, and get her own popsicles.
Brooke’s health problems made Sander feel like she was living in a fishbowl. “Everyone wanted to know what we as parents were doing wrong,” Sander said. The doctors and nurses at her local hospital tried to help, talking to her about theophylline levels and discussing the differences between brand name drugs. “Often times, I felt like I spoke a different language than the medical people around me.”
When Brooke turned 5, she was entered in a drug study program at Georgetown University Hospital. Nancy recorded her daughter’s daily symptoms and took a peak flow meter reading twice daily. “That’s when we started to trace things to her sinuses, to her food allergies,” Sander said. The knowledge helped to shift Brooke’s treatment from a crisis-oriented approach to a prevention-oriented strategy. “I thought ‘This is how it should be in America,'” Sander said.
She began writing a short newsletter for her primary care doctor’s and allergist’s offices to help other families of children with asthma. This grew into an organization dedicated to helping parents understand and advocate for their children with asthma, called the Allergy and Asthma Network Mothers of Asthmatics. From there, Sander was invited to participate in shaping guidelines for the National Institute for Health (NIH) National Asthma Education and Prevention Program, and to serve on the US Food and Drug Administration Allergenic Products Advisory Committee, and the U.S. Environmental Protection Agency, Indoor Air Quality Partners.
But her proudest accomplishment is when the NIH guidelines were revised to support a patient-centered approach to asthma treatment. “Asthma doesn’t have to dictate your life like it did 32 years ago when Brooke was born,” Sander said. While her daughter still has asthma, allergies, food allergies, and reflux, they are all well-understood and managed. “She still has the diagnosis, but the diagnosis doesn’t have her.”
