Hi All I visited NIH to supply blood for the research that is taking place on SCLS. It was really worth the trip. When I got there I was having minor leak so they took blood right away. I found out that they have a few more people coming out that will bring the study total to 15. They are trying to get 30 people enrolled. Right now it is a one time trip. . You need a letter of recommendation from your doctor. Here is a link to the study information: "http://tinyurl.com/y74tg7v":http://tinyurl.com/y74tg7v Just copy and paste it in to your browser. They provided me with a lot of information and helped me with the leg pain I have had since the major attach I had in July 09. Take Care, Rita

My brother went to NIH in the summer of last year and then had a leak in sept 2009. He has only had 2 episodes but they are major, although the 2nd was not as bad as the first. He lives in washington dc area so i contacted dr druey from NIH and he went and got blood within a few hours of attack which we hope will be helpful. Dr. Druey was also helpful in advising the ICU docs on my brothers treatment through this episode. We are eternally grateful and Dr Druey has been very helpful and imformative in regard to my brothers care. If possible to participate you will not only help NIH but yourself as well.

Hello, I just returned back from a visit to NIH. I am so glad I went. I was diagnosed with Capillary Leak in 2004. I just recently had 3 attacks in December 09 that put me in the hospital. The last one was on Christmas Day, I was released on New Years Day. I was given the IVIG treatment for three days. I started to feel so much better after receiving the treatment. I learned so much at NIH. It is a wonderful facility. A patient I shared room with stated it very well I thought, " the disneyworld of hospitals" The staff could not have been nicer. Dr. Druey is awesome. He is very anxious to see more of us. So please if you have not yet been, please consider doing so. It will help us all, and further advance the research at the center. They are planning some extremely innovative research in the very near future. With the participation of all of you, I am anticipating a cure in the very near future. We must stay positive! Blessings, Mary Jane

Nolan and I just returned on Saturday, May 15th, from NIH. It was a long way for us to go so we decided to do some site seeing between tests. It was great. We hope that the samples that they got will be able to help figure out what is causing this strange disease. If you can get there I would encourage you to go. Best wishes, Wendy