I had an enjoyable experience at the NIH in July. Dr Druey & Celeste spent alot of time with me & I'm greatful for the add'l knowledge of SCLS they could provide. I wasn't feeling too well last Saturday & went to ER last Sunday morning after a drop in my BP under 100 (as instructed by NIH) I skipped the triage, went directly to ER & then directly to ICU for monitoring. I gave the ER Dr the information I prointed off Rareshare & Dr Druey's phone #. My theophyline level as too low, so my dosage has been increased to 900 MG daily. They also put in a power port for easy access for bloodwork, IV's etc. I came home yesterday (Thursday) feeling better, but still very tired. I credit the knowledge I recv'd from NIH & Arturo for the info posted on this site to my shorter hospital stay & "milder" symptoms. I encourage any SCLS patients to take advantage of the research study at NIH. Knowledge is the key for helping everyone! Go Green Bay Packers !! Take care everyone ! Dawn Fye