It's that time of year again! It's time to kick off the annual Hundred People Search campaign - our challenge to the HPS community to help us reach out and find those affected by HPS who either don't know about the HPS Network, or don't know they have HPS. We all understand how scary having HPS can be. But consider what is really scary - having HPS and not knowing it. Think about developing pulmonary fibrosis and receiving a diagnostic open lung biopsy that causes excessive bleeding. Now that's scary, potentially deadly and completely avoidable. What about finding yourself in an auto accident. You do have injuries, but the doctors at the emergency department don't think your injuries are so severe that they should bleed this much. They can't explain it, but they can't make the bleeding stop either and the situation grows more dire with each passing moment. These are just a few of the things that can happen when you have HPS and don't know ...
Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life