I am passing on a request I have just received from Dr. Kirk Druey of the National Institutes of Health -- to my knowledge, the only scientist in the world (and one who happens to be affiliated with the world's leading medical research institution) who is carrying out pioneering biomedical research on SCLS:
*Would everyone who ever experiences an episode of SCLS and has their blood tested in the process please ask their doctor or hospital to make arrangements to send in to him the leftover blood sample(s) from the onset of symptoms and/or from the early stages of a confirmed episode (namely, when the blood is hemoconcentrated)?*
He is running very short of such blood samples for his experiments, and they would help him tremendously to identify markers of the disease and causative factors. It does not matter if you had an episode while you were on no medication, on theophylline/terbutaline, or on IVIG.
The blood must be sent chilled but not frozen, and he and his assistant will gladly speak to or email instructions to whatever testing laboratory, medical clinic or hospital has the blood samples. It can be sent from anywhere in the world where they have the right packaging to handle medical specimens and there is an overnight delivery service to the USA.
Most laboratories, clinics and hospitals have a policy of keeping the fluids they test for a week or more, just in case they need to be retested, so you can ask to take possession of your blood after the episode is over and grant the necessary permission to have it sent to NIH.
The contact information is: Dr. Kirk Druey, _kdruey@niaid.nih.gov_, tel. 1301-435-8875. His assistant is Ms. Laura Wisch, _wischl@niaid.nih.gov_, tel. 1301-594-1192.