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Mayo Clinic Features SCLS

aporzeca Message
30 Apr 2009, 03:08 AM

I'm pleased to report that, as of this week, the highly reputable Mayo Clinic has included SCLS in its authoritative and widely consulted inventory of "Diseases and Conditions": see We are grateful to Dr. Philip Greipp of the Mayo Clinic for his help in spreading essential information on SCLS to patients and the medical community throughout the world.
greipp Message
30 Apr 2009, 05:19 AM

Truth be told... We are grateful to Arturo, a major driver for the NORD, RareShare, Mayo Clinic and other efforts to improve knowledge and understanding of SCLS. Your commitment is your legacy. Thank you, Arturo Phil Greipp
allenoverland Message
30 Apr 2009, 03:06 PM

Dear Arturo and Dr. Greipp, We are all pleased for both your commitment to helping us understand and deal with SCLS. We have a real community now! My thanks to both of you, the Mayo Clinic and everyone in Rareshare! Allen
rnolan Message
1 May 2009, 05:21 AM

I second those sentiments Allen. This community is very important and informative to me as I feel very isolated here in NZ. I had an appointment with my hematologist yesterday unfortunately he was on leave and I got to meet with a registrar and it was a big waste of time... She was not at all interested and I have come away feeling very let down! I am in good health at present however I have come away feeling that if I was to strike her if ever I do have a major attack again I would die. Not really a very nice feeling! I did however give her a copy of the Sharing the Pain article so hopefully she will read it and do some investigating. Who knows she just might learn a little more about how serious this condition can be? So thanks again Arturo and Dr Greipp for keeping us so well informed! Ruth
claude53 Message
1 May 2009, 05:23 PM

I address my thanks to Arturo and to the Mayo Clinic team, especially to Dr Philip Greipp, for the easy comprehensive informations about SCLS. I am very happy to note that IVIG belongs to the suggested therapy. I think that during an acute lifethreatening capillary leak, the use of IVIg is justified at a rate of 2 G / kg during 24 hours. Claude Pfefferlé