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Nanci's Story

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RARE LUNG DISEASE

For a long time, the only thing that could slow Nanci down was her nagging cough. Experiencing it from a young age, simply raising her voice or singing could trigger shortness of breath. As her symptoms continued into adulthood, she often blamed her weight. She tried to exercise more while her doctors continued to prescribe asthma medications and antihistamines, but none of it seemed to alleviate the agitation. “It was very frustrating,” says Nanci. “I’d see a new doctor or try a new medicine every few years, but nothing worked. I felt so discouraged.” 

In addition to being a wife and mother of two, Nanci works two jobs and volunteers on the board of a hospital. “I stay really active,” says Nanci. “It’s so important in life to be connected to people, that’s why I’m involved in lots of things!” Amidst steroid and nebulizer treatments, she says she got to the point where she felt like a “walking zombie, unable to enjoy these activities that she found fulfilling”. 

After significantly changing her diet several years ago, Nanci lost 60 pounds and noticed it was easier to breathe. However, the cough persisted. Shortly thereafter, she received a phone call from a hospital where, seven years prior, she had completed a routine heart scan. They told her the results revealed nodules on her lungs. “I completely freaked out,” Nanci says. “They had seen the original nodules, but I didn’t get a call until then. I didn’t feel like seeing another doctor and explaining everything all over again.”

With encouragement from her sister, Nanci mustered the energy to make one more phone call; this time, though, she decided to look for a female doctor. “My sister suggested the idea,” says Nanci. “With previous doctors, I wasn’t really able to connect well. She thought maybe I would relate to a woman better.” Together, they contacted Temple Lung Center and booked an appointment with a physician in the Women’s Lung Disease Program. The first of its kind in the region, the program makes it possible for female patients to identify and select female doctors who have an extensive understanding of sex-based health differences. 

Nanci met with Dr. Jamie Garfield, one of several female doctors who championed the program. Dr. Garfield reviewed Nanci’s medical history to further research her symptoms. They discovered Nanci had Diffuse Idiopathic Pulmonary Neuroendocrine Cell Hyperplasia (DIPNECH), a rare lung disease found almost exclusively in middle-aged women who are non-smokers. DIPNECH is caused by hormone-secreting cells in the lungs, which is why asthma treatments, geared towards issues in the bronchial tubes, never helped Nanci. “I tell everyone that meeting Dr. Garfield was fate,” she says. “Without her persistence and knowledge of hidden gender bias, we would’ve never figured it out.”

Today, Nanci uses oxygen support to help get a full night’s rest and occasionally visits with her care team to monitor her disease. Although there is no cure for DIPNECH, Nanci says she feels reassured knowing what her disease is and how to manage it. “Understanding it all allows me to get up and on with my day,” explains Nanci. With newfound peace of mind, she can refocus on her family, work and community. 

Nanci is also thrilled to soon welcome her first grandchild into the world—a moment she says wouldn’t have been possible without Dr. Garfield and her Temple care team: “When I first met Dr. Garfield, I told her I just wanted to live to see my daughter get married. Now, not only did I see her get married but also I’m about to become a grandmother!”