People with HPS types 1 and 4, over the age of 18, are needed to participate in a research study at the National Institutes of Health investigating the lung disease of Hermansky-Pudlak Syndrome. Volunteers will be asked to undergo a lung lavage to collect cells from the lung.
A lung lavage involves inserting a tube with a tiny camera on the end into the upper lung, and then squirting saline fluid into the lungs to cause the volunteer to cough. The coughing causes the lungs to sluff off cells which are then suctioned up as fluid. (The HPS community has nick named the fluid “liquid gold” because of its value to research on the pulmonary fibrosis of HPS).
Patients are technically awake for the procedure, but are given drugs so that they have no memory or awareness of the procedure.
Some medical conditions may prohibit one from volunteering.
Those who have already undergone lung lavages can re-volunteer every six months.
If you would like us to add your name to a list of possible volunteers, please e-mail Heather Kirkwood at: hkdawn@yahoo.com.
A lung lavage involves inserting a tube with a tiny camera on the end into the upper lung, and then squirting saline fluid into the lungs to cause the volunteer to cough. The coughing causes the lungs to sluff off cells which are then suctioned up as fluid. (The HPS community has nick named the fluid “liquid gold” because of its value to research on the pulmonary fibrosis of HPS).
Patients are technically awake for the procedure, but are given drugs so that they have no memory or awareness of the procedure.
Some medical conditions may prohibit one from volunteering.
Those who have already undergone lung lavages can re-volunteer every six months.
If you would like us to add your name to a list of possible volunteers, please e-mail Heather Kirkwood at: hkdawn@yahoo.com.
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