The Pulmonary Fibrosis Foundation (PFF) is the nation’s leading pulmonary fibrosis (PF) and interstitial lung disease (ILD) patient education and advocacy organization. The PFF is committed to advancing improved care for those living with  PF and ILD while providing unequaled support and education resources for patients, caregivers, family members, and healthcare providers.

Scleroderma-associated ILD brings unique challenges, but no one has to face them alone. The PFF is here to provide resources, education, and a supportive community. Below, two individuals share their journeys with scleroderma-associated ILD and how the PFF has made a difference in their lives.

 

Rodrigo’s journey with scleroderma-associated ILD began in 2016. One morning, he woke up completely out of breath and went to urgent care, where he was given nebulizers and sent home. They sent him home and told him to follow up with his primary doctor, who immediately sent him to the hospital, where a pulmonologist ordered a CT scan and discovered lung fibrosis. After months of appointments with different specialists, his endocrinologist connected the fibrosis to scleroderma based on his symptoms, confirming the diagnosis. The news was difficult to process, especially when he was told he might need a lung transplant one day. As a younger man who initially thought he was just “out of shape,” it was overwhelming to realize his shortness of breath and limited stamina were caused by a serious lung disease. In 2018, after having pneumonia, he began using oxygen full time and eventually had to step away from his career as a paramedic and in EMS, which had been a central part of his identity.

Finding support and resources helped Rodrigo move forward. Pulmonary rehab introduced him to the PFF, where he began exploring educational materials and support groups. After receiving a lung transplant in June 2020, he became more involved as a volunteer with the Foundation by participating as a PFF Ambassador. The PFF Ambassador program has provided him with opportunities to share his story, connect with others, and offer support to people facing the same uncertainty he once felt. “Because of how the support group I went to helped me, I wanted to be able to provide that to someone else,” Rodrigo explains. His wife and family have been a constant source of strength, and his positive outlook continues to carry him through the challenges of living with scleroderma-ILD. Despite the obstacles, he remains committed to living fully, continuing to travel, adjusting his lifestyle as needed, and has created a new project for himself of sharing restaurant and food reviews from Philadelphia on his Instagram. For Rodrigo, resilience, connection, and positivity have been key to navigating this journey.