The National Institutes of Health is interested in seeing HPS'ers with a gene type that does not cause lung disease. (This would be type 3, 5, 6, 7, or 8.......) They are interested in performing lung lavages on HPS'ers that are not at risk for lung disease in order to collect fluid for the lungs (BAL fluid) to be used to compare to that of HPS'ers that have gene types that do cause lung disease.
They have noticed that the BAL fluid of HPS'ers that have genes that cause lung disease has differences from that of control groups. They need to determine whether those differences are part of HPS in general, or whether they are unique to HPS'ers that will develop lung disease.
A lung lavage involves putting a tube down your throat and into your lungs, flushing liquid into the lungs, and then sucking up the fluid after you cough. It sounds horrible, but I've had it done several times and it's not that bad. They give you wonderful drugs! While you do have to be awake in order to follow instructions, you don't remember anything. It's just as if you were asleep.
If you are interested in learning more about this opportunity to help with HPS research, contact me at: firstname.lastname@example.org - or call the HPS office at: (800) 789-9HPS.