Since you are new to this site I would like to offer some suggestions that might help you navigate around this community; if you already know this stuff, I apologize in advance. I discovered a wealth of info by clicking on each members' picture and reading their personal histories of SCLS. Not everyone has completed all the information but several tell about their previous attacks and symptoms which are exactly like yours. You also get ages, etc. Its kind of like looking at a yearbook, if you know what I mean. Secondly, Arturo has done a great job of putting a list of Disorder Resources together so if you click on that item several great articles there. Finally, you will find that browsing through the discussion forums on each entry also gives you a good history of what's been done on various issues. Basically you find out that you are not alone. Sorry if this sounds like remedial web surfing 101 but maybe it will help. Hit em long and straight.

Dear Mahaff: I hope this email finds you feeling well.Thank you for the warm welcome. What a wealth of information on this site! I am still trying to navigate my way through and digest it all. I was extremley moved by the Washington Post Story. Arturo is an inspiration to us all!! After reading others stories/symptoms, I suddenly don't feel all alone. (Nobody here in Michigan has even heard of scls although my Nephrologist/Hypertension Specialist did think I had a capillary leak that was due to a systemic chronic allergy) I was wondering if there's a way to see all scls members profiles?It seems like only a few at a time are randomly displayed.I also wonder how many people have scls. And how many ACTUAL members we have .I notice a lot of people have not signed on in many months and its obvious some do not even provide accurate birth dates but rather curiously signed on. Again, thanks for the tips And the warm welcome.Im so thankful for this site. Take care, Susan

Oakwood hospital in Detroit is where I had my last serious attack before I started IVIG. They are familiar with Dr. Drurey's protocalls. I'd be happy to share more detail if you're interested.

Thank you for your reply.Do you mean the Oakwood Hospital in Dearborn, Michigan? Would u mind emailing me the name of the Doctor with whom you treated? My email is: susanfv@gmail.com. thanks!