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Finally Some Scientific Evidence!

aporzeca Message
12 Mar 2012, 09:54 PM

As most of you know, during the past more than 3 years, Dr. Kirk Druey of the National Institutes of Health in Bethesda, MD, has been carrying out sophisticated biological (and particularly vascular) research to try to determine the underlying biomedical reasons for our life- and limb-threatening illness. He has also tried to determine to what extent any of the medications we take can be seen in the laboratory to help minimize or prevent the damage done by our illness. Of course, none of this research would have been possible without the personal cooperation of some 40 members of this virtual community, who took the trouble to come see him and his team at NIH, sometimes more than once, and also without the cooperation of our personal doctors who sent in blood and other biological samples during our normal times -- and especially valuable, also during our acute episodes. I am extremely pleased to report that the leading medical journal “Blood” has today published a research article co-authored by Dr. Druey and his colleagues at NIH, and involving also researchers from Harvard and the Mayo Clinic. This article provides never-before seen laboratory evidence of what happens to healthy capillary tissue during an episode -- and also what happens when those walls are pre-treated with intravenous immunoglobulin, IVIG. The article is titled “Vascular Endothelial Hyperpermeability Induces the Clinical Symptoms of Clarkson Disease (the Systemic Capillary Leak Syndrome),” and is available from me upon request at _aporzeca@american.edu_ To make a complex story short, Dr. Druey and colleagues found that when they applied in the lab serum obtained from our blood at the start of an episode of SCLS to healthy capillary cells (called endothelial cells), these cells separated, allowing for the increased permeability that enables our plasma to leak out into muscle compartments and other body cavities. Prior to this finding, it was thought that the only way we could have the damaging effects that we do when we have an acute episode was because our capillaries leaked massively – but the phenomenon itself had never been observed microscopically. (For one thing, it is very hard to grow these capillary cells in the lab.) Moreover, Dr. Druey and colleagues found that when those capillary cells are pre-treated with IVIG, that sheltered the endothelial cells from the effects of whatever is wrong with our blood at the start of an episode of SCLS. Therefore, his article likewise provides microscopic evidence of why IVIG prevents episodes of SCLS. As you can imagine, this scientific finding should make it much easier to persuade patients, doctors, insurance companies, and other medical authorities around the world that monthly infusions of IVIG are the gold standard of care for patients experiencing episodes of SCLS. If anybody in the United States or abroad reading this entry has not yet made arrangements to come and see Dr. Druey and his team, or to have blood and other samples sent to him by your doctors and hospitals, let me tell you that it is not too late. He is still looking for more patients to include in his ongoing studies. And if anybody would like to congratulate Dr. Druey for his precedent-setting research results, and to encourage him to persevere with his ongoing scientific studies, feel free to write to him at _kdruey@niaid.nih.gov_
allenoverland Message
13 Mar 2012, 01:34 PM

Dear Arturo, Thanks this is great news! I will send my congratulations to Dr. Druey for his interesting new article on SCLS. And as always we all appreciate your work in supporting the group and all its members. All the best, Allen
emouzon Message
13 Mar 2012, 02:08 PM

This is great news. It's wonderful to see that the hard work of Dr. Druey and his team has had some concrete results.
jisenhour Message
13 Mar 2012, 02:30 PM

Amazing, simply amazing.
Josephite Message
13 Mar 2012, 08:05 PM

This news has made my year.
glhutton Message
14 Mar 2012, 01:43 AM

This is Great News !!! Arturo, thank you for the article. I have forwarded it to my Hematologist and he is reading it with great interest. I am receiving my 13th straight month of IVIG and have not had any leaking episodes since. I will send my thanks to Dr. Druey and his team for their continued efforts to help us all with this disease. Glenn
elganzory Message
15 Mar 2012, 12:08 AM

Dear Arturo THANK YOU FOR ALL THIS HELP THAT YOU ALWYES DO FOR ALL OF US , IF YOU CAN SEND TO ME THE ARTICAL OF Vascular endothelial hyperpermeability induces the clinical symptoms of Clarkson disease (the systemic capillary leak syndrome) BECOUSE I LL GOING TO MEAT DR. AMOURA AT THE FIREST OF APRIL MY BE WE CAN US IT , AS YOU KNOW I US IVIG SINCE LAST YEAR 1GR/K EVERY THING IS OK ABOUT THE HEADIK THAT I HAD BEFOR BECOUSE THIY WAS CHANG THE COMPANY WHICH PRODUCE IVIG I ALWYES US (IG VENA) KEDRION ITS VERY GOOD AND THER IS NO SID EFICT SORRY FOR MY INGLISH BUT I TRAY ALSSO TO HELP SOMEBUDY WAS HAD THE SAME THING BEFOR THANKES AGIN YASER
BPerry7 Message
20 Mar 2012, 07:12 AM

This is a great advancement!
Windows Message
20 Mar 2012, 08:47 AM

How are you going BPerry7? Have you had a diagnosis yet? If I remember clearly you had not had one ( I might be incorrect)
jordansh Message
1 Apr 2012, 03:01 PM

I would like a copy of the article please. Glad to see advancement in the study of this illness.
rnuara Message
1 Apr 2012, 03:54 PM

This is great news. Congratulations to Dr. Druey and all who were willing to participate in this study. Having a definitive treatment to prevent this debilitating condition is FANTASTIC. Robert