In her early 30s, Bonnie began to experience frequent shortness of breath. Though she was still active, she noticed that everyday tasks like exercising, climbing stairs and dancing left her breathless and exhausted. Her healthcare provider initially diagnosed her with asthma, so Bonnie faithfully adopted a management plan. Despite strictly following doctor’s orders, her symptoms worsened. When she moved from Chicago to Boston to pursue a job opportunity, she found the hilly terrain made it even more difficult to breathe.
Her new pulmonary team, which included an allergist, evaluated her and suggested she be tested for Alpha-1 Antitrypsin (Alpha-1). Though she didn’t think she fit the usual stereotype, she agreed and was shocked by the results. “Everyone was very surprised because they didn’t know much about the disease,” Bonnie said. “But I have since learned that anyone can get it... it’s a rare disease that is hard to diagnose, so many more people may be living with it unaware."
Learning to Live with Alpha-1
As she began her Alpha-1 journey, Bonnie found confusing advice online—especially when she read she needed to adapt to a high-fat diet. “I was devastated,” she admitted. Fortunately, she discovered AlphaNet, a nonprofit that offers patient-to-patient support about their new diagnosis and treatment options. “I learned that the practice of eating high fat was outdated, as was much of the other information readily available on the internet,” she said.
As she began her Alpha-1 journey, Bonnie found confusing advice online—especially when she read she needed to adapt to a high-fat diet. “I was devastated,” she admitted. Fortunately, she discovered AlphaNet, a nonprofit that offers patient-to-patient support about their new diagnosis and treatment options. “I learned that the practice of eating high fat was outdated, as was much of the other information readily available on the internet,” she said.
Through AlphaNet, Bonnie learned a more holistic approach to managing her health that emphasized a balanced diet, frequent exercise and taking proactive steps to prevent infection, like getting your annual vaccines. Additionally, she began weekly replacement therapy infusions, which replenished the missing antitrypsin she needed. She was moved to in-home infusions because it was covered by her insurance and for over 20 years, the infusions helped her manage her Alpha-1. But when she retired and went on Medicare, her in-home infusions were no longer covered. This was particularly difficult because by this time it was hard for her to travel to the hospital and it exposed her to sick people, which was dangerous in her immunocompromised state. So, her doctor suggested she consider a lung transplant.
Fighting for Treatment
Years earlier, when Bonnie broached the subject of a lung transplant, her pulmonologist dismissed her, saying the procedure would do little for her quality of life. But after meeting her future husband at an Alpha-1 conference, she decided to get a second opinion. Thriving nearly 10 years after his own transplant, he encouraged her to find out if she qualified. “Some providers’ minds are closed... they will only listen to other doctors and ignore the patients' thoughts and concerns. That’s why you must strongly advocate for yourself,” Bonnie stressed.
So, when she reached the end-stage of her lung condition and Medicare stopped covering her infusions, her current pulmonologist referred her to a transplant center. Soon after, Bonnie received a single lung transplant, and the transformation was profound. “Before surgery I depended on oxygen 24/7 and had to use a scooter and wheelchair to get around, so my life was limited. Now I can lift weights and rediscover many other activities I loved,” she reflected.
From Patient to Advocate
Long before Alpha-1 was a part of her life, Bonnie was already fighting for lung health. As a young mother in Chicago, she became involved with the American Lung Association, first through Christmas Seals, then through smoking cessation—a mission fueled by her own decision to quit. She eventually trained to become a cessation counselor and even completed a dissertation on tobacco use.
Her passion soon grew into policy work, where she pushed for local ordinances limiting indoor smoking. “I became kind of obsessed with that,” she admitted, recalling her role on the Skokie Board of Health and the pride she felt when the smoke-free legislation she helped champion “became a model for other places around the country.” The Lung Association backed her efforts, offering guidance, testimony and support against Big Tobacco’s pushback.
Her involvement deepened after she was diagnosed with Alpha-1, expanding her advocacy to issues that directly impacted lung health—clean air laws, cessation resources, oxygen accessibility, and in-home infusion coverage. Bonnie worked closely with national organizations and returned to the Lung Association for its annual Advocacy Day on Capitol Hill in Washington, D.C. “I always look for opportunities to be involved,” she said, driven by the belief that good advocacy isn’t abstract—it protects real people who, like her, need systems that help them breathe, move, and live fully.
Finding Purpose and Making a Lasting Difference
Looking back on her decades long journey with Alpha-1, Bonnie says her biggest takeaway is the power of awareness and action. “Early detection is very important,” she emphasized, urging people not to avoid testing out of fear because, “there’s nothing to be lost and much to be gained.” While Alpha-1 may not have a cure, she believes that the earlier someone knows what they’re facing, the sooner they can access treatments and extend their life.
Her second message is about voice and collective strength. Bonnie insists that individuals matter—even those who feel limited by illness—because there is strength in numbers. Whether sending letters, speaking up or just supporting others, Bonnie believes even small advocacy efforts can influence change. “Everybody can’t do everything,” she said, “but these small efforts are important because they remind decision-makers that patients have a voice and deserve to be heard.”
You can learn more about alpha-1 by calling 1-800-LUNG-USA or visiting Lung.org.
Blog last updated: December 22, 2025
