Living Well With ILD


Living well with ILD is a marathon... not a sprint. Learning to take care of yourselves in all aspects of life EARLY on is critical.

ILD patient

UCSF ILD Program

Some people say that with time, the initial shock of a diagnosis of ILD diminishes, but that finding ways to live with ILD, its symptoms, and associated therapies become the priority.  At this point, you may have a fairly good understanding of ILD, but find that you need to learn more about managing symptoms and treatments such as supplemental oxygen or medications. The information in this manual, Living Well with ILD, comes from studies, but more importantly, from years of learning from people like you, who come to our clinic, attend our support group, interact with the Pulmonary Fibrosis Foundation, and participate in studies.   

A significant portion of the material in this section comes from our colleagues in the palliative care program. This team is made up of internationally renowned experts leading the conversations on living with serious illness. Palliative healthcare providers do not just care for people with advanced stages of disease; they are meant to help you at any point in time throughout your disease process and are experts in managing the wide variety of symptoms individuals with ILD might experience: fatigue, shortness of breath, cough, anxiety, depression, difficulty coping with changes in your lifestyle, etc. Talk to your provider about a referral to the UCSF palliative care program.