I first met Kate Tierney six years ago. Within minutes I realized I was in the presence of an extraordinary human being.
At age 6 Kate began experiencing symptoms of an extremely rare disease that would not be accurately diagnosed for anther ten years. Eosinophilic granulomatosis with polyangiitis [EPGA] is an autoimmune disorder characterized by inflammation of our blood vessels which can lead to life-threatening organ damage. The cause of the disease is unknown. There is no cure.
I recently spoke with Kate from her home in Massachusetts about her decades-long experience living with a deadly disease. As a child she felt tremendous shame about her condition and did everything she could to hide her struggles from others. By age 16 she found herself increasingly depressed, alone and suicidal.
Today Kate lives an extremely public life as an EPGA ambassador, raising public awareness of the disease in her travels across the country and talks at major conventions. She advises pediatric rheumatologists on providing care to young patients, raises funds for EPGA research through the Vasculitis Foundation, and works directly with newly diagnosed patients as a mentor and a friend.
Kate’s widening her focus from her own suffering to encompass the physical anguish, fear and hopelessness of many others offers a template for all of us living with chronic, incurable and life-threatening conditions. We welcome you to our heartfelt conversation.