Yesterday I visited with Dr. Kirk Druey, the lead scientist at the National Institutes of Health who is carrying out the first serious study of the scientific causes of SCLS, and he told me that, during the months to come, he still needs to interview and draw blood samples from about 10 more SCLS patients -- in order to have enough raw material to conduct his sophisticated laboratory studies. Therefore, he encouraged me to broadcast this message. If any of you are willing to come to the Washington DC area and spend a couple of days at NIH and to donate some of your blood at any point in 2009-10, please write an email to Nurse Wei Lu, the SCLS Research Study Coordinator, at luwei@niaid.nih.gov. She will make the appointment at your convenience. Foreign SCLS patients or others without a Social Security number are welcome also, although there is additional paperwork that must be completed ahead of time. There is no cost to staying the usual 36-48 hours at NIH. Please help advance our extremely limited knowledge of the scientific basis of Systemic Capillary Leak Syndrome. It is also our only chance to discover, eventually, a targeted cure for it.

Hello Arturo. Do you think the non-american persons concerned by SCLS could have blood tests in their country and transmit the results to the NIH? Claude

In reply to your question, Claude, Dr. Druey tells me that he certainly can evaluate medical records and test results -- and later on, blood samples -- sent from overseas, and enroll patients like you in the SCLS Protocol who are unable to visit NIH for the sole purpose of providing blood samples. To begin with, please prepare and email to Ms. Lu a summary of your medical history (in English) and scan and send any relevant blood test results showing, for example, if you have the MGUS protein, and also any blood results obtained before, during and after your last episode. The details of your monthly infusions of IVIg that you have posted elsewhere in this site are also of great interest, so please add them to your medical history. Many thanks!

OK. I will do my best as soon as possible. Thank you for your help. Claude

Thanks for sending this message to the group Arturo. I am going for a follow up visit with Dr. Druey and strongly encourage participation in the study. I think SCLS is something that can be managed and hopefully even cured but we desperately need more information. We are blessed to have Dr. Druey, Dr. Griepp and you Arturo leading the charge! Best, Allen

I am scheduled for Oct. 13 - 16. If we think there is someway to beat the CLS, it sure looks like with Dr. Druey. Please make the contact with the NIH. Wei is extremely helpful in making arrangements and scheduling you at your convenience. I know it is 3-4 days that some may not want to give up but, it will help in the long term. Walt

Hi all My brother is allen. He recently had his 2nd major scls attack the beginning of sept 2009. First, I can not encourage you enough to take your theophylline or meds that fend off or minimize these attacks. The side affects are minimal compared to the risk you take by not using them. Allen missed some doses of his theophylline and we are sure this contributed to his recent episode after being virtually episode free for 6 yrs. Secondly, I can not emphasize the importance of rareshare ,arturo, dr.druey of nih, dr greipp of the mayo clinic and your fellow scls contributors on this website. We all need to work together to figure this whole thing out. During allens recent episode I was in contact with arturo, dr druey and dr greipp and immediately they were all very helful in his care. Arturo and dr druey made personal visits to allen in icu as soon as they knew to offer advice and support and dr greipp was there via email and phone. Their input was critical in his care and recovery as we still are dealing with medical professionals that are not as familiar with scls as we would like them to be. Dr druey took blood within 24hrs of his attack and we are hoping this helps everyone. Dr druey and nih are really doing a great thing in providing this study and it would be great for all who can help out by participating. Washington is a great place to visit and you have a good part o your support group in the area. It would give you an oppurtunity to possibly meet each other and share information. Since there are so few cases diagnosed hopefully everyone can do their part. As far as medical care while in dc I think you will find it the best in the country for scls( especially at nih) other than possibly the the mayo clinic with dr greipp. I know travel is worrisome for some scls patients so that is important. Allen is fine and had no serious complications from his recent attack. We are eternally grateful to arturo, dr druey and dr greipp for all they do. Hopefully this study will give us some answers and we will be better for it. Linda

Can we participate post mortem? With some permissions? I know that there is an abundance of information from Glenn's many attacks as he was poked and prodded in several states. There was also an autopsy done. Dr Griepp- are you sharing the medical files on these patients with NIH?

I too would like to participate in this study.

Dear Jordansh: If you could make arrangements with Nurse Lu to forward your late husband's medical files and lab reports, or authorize Dr. Greipp to do so if he has them, that would be great. Dear Dannycfi: Thank you! Please contact Nurse Lu, as instructed above.

I am going to NIH in March 2010.

Bless you, Ritz. It's a long way to come from Wisconsin, I realize. I wish you good health between now and then.

Please let me know what's happening on march 10th. NIH THANK YOU