Hello Colleen, I'm not surprised you hadn't heard about BHD. I was diagnosed at Mayo Rochester Genetic Department 6 years ago and only about 5% of medical professionals I dealt with knew about it. It is a genetic disease. We assume it came from my mother who had a pneumonthorax at age 40. My daughter and grandson have tested positive for it as well. The symptoms are many and the list is growing according to the foundation I am following. For me, the lung cysts and damage from pneumothoraces has caused the most damage and I am being treated for that. I also have tests monitoring kidney cysts; no problem so far. My first pneumothorax was over 30 years ago, however, I didn't have many issues until about 15 years ago. I visit Mayo Minn yearly. I do take meds to control my lung symptoms. My most recent issue is finding pseudomonas in sinuses and lungs. This has been the most challenging issue I have had so far. Thank you for your interest. I will follow the discussion. Donna