Charlotte was diagnosed with BHD after multiple lung collapses in the family. She discusses how it felt to find a mass on her kidney and how the treatment did not go as expected.
Kathy was diagnosed with two genetic lung conditions. In this interview, she discusses her decision to be tested for BHD, her lung symptoms and why research and awareness of BHD are so important.
Lenke was diagnosed with BHD after a collapsed lung during her pregnancy. In this interview, she discusses her pregnancy, genetic testing, her decision not to have IVF and her yearly BHD dates with her mum at the clinic.
Cassandra a member of the BHD community shared what it felt like to get a collapsed lung, the resulting surgery and how it affected her everyday life.
Paije was diagnosed with BHD in her 20s and required surgery for a collapsed lung. In this interview we discussed what it felt like to have a collapsed lung, recovering after surgery and USA health insurance.
Julia developed her first skin lesions in her early 20s. In this interview she discusses how the skin symptoms have impacted her both physically and mentally.
Lea completed her first Ironman in 2021 at the age of 57. You’d never know she’d had multiple lung collapses and lung surgery and, as it turned out, a rare inherited condition.
Bob was diagnosed with BHD after a routine scan accidentally picked up a mass on the top of his kidney. In this interview, we discuss how being a doctor affects his perspective on BHD.