Frankie’s life has changed dramatically since developing nonspecific interstitial pneumonia (NSIP). She has the fibrotic form of the disease which causes permanent scarring of the lung tissue, making it harder to get oxygen into her lungs. Describing how it has changed her life she says, “I never sat still. And now…if you don’t sit still, you can’t breathe.” Frankie also has mixed connective tissue disease, which often presents alongside nonspecific interstitial pneumonia. That means she is dealing with multiple autoimmune symptoms alongside her lung fibrosis.
In this episode of the Major Pain podcast, Frankie shares the story of her health journey. She discusses becoming medically disabled after a back injury, years before entering respiratory failure and discovering she has NSIP. As health challenges compounded upon themselves, she also faced constant pushback from doctors. Since her disease is rare, some doctors are unfamiliar with it and therefore unwilling to acknowledge or treat it. This made it needlessly difficult for her to get care, adding anxiety to an already stressful situation. Still, her fighting spirit and positive attitude shine through as she gives us a glimpse into life with her disease.