I recently spent two and a half days with Dr. Druey and his team at the National Institutes of Health during the last week of July. I checked in at the NIH hospital and then went through a battery of tests to assess my Systematic Capillary Leak Syndrome. All the tests were free and arranged in advance by Lauren Long, who is a member of the Druey team. She also escorted me to most of the test facilities. The tests lasted about a half day, and I had the other half of the day to rest or to walk around the NIH campus. If you can manage the trip to NIH health-wise and the cost of traveling there, you will not regret it. The team not only oversaw the tests and results, but they met with me three times – talked through the results and answered my numerous questions about my condition, about what I can expect from future IVIG infusions, and about medical alternatives. It is this attention that struck me as particularly valuable and the opportunity to ask the team questions that you cannot get answered at your home hospital, largely because they know so little about this disease. I found none of the tests painful or onerous. Some people have difficulty with an MRI or with skin tests. I found the skin tests relatively painless. And the MRI is quite large and I felt very little claustrophobia. The most important thing about the trip is getting your health assessed by the leaders in the field and getting guidance on your treatment in the future. If you can manage getting to Washington, I urge you to do so for your own well-being. The NIH and the Druey Team are a special group, and particularly valuable for those of us who are battling SCLS. Davec

I'm glad you had a good experience at NIH. Everybody else who has gone there has come out similarly impressed and reassured that somebody actually cares about us patients with SCLS. Moreover, the simple fact is, we can't expect scientists to do their job and make progress in understanding the complex mystery that is SCLS if we don't give them the necessary raw materials. If we don't come through with the necessary clinical histories and blood and other medical samples, who will? And I can testify to the fact that if you ever encounter problems with doctors or insurance companies, there's nothing like having Dr. Druey and his colleagues at NIH in your corner, to help you get the supportive care that you need. They're as compassionate as they are competent.

What medical alternatives were discussed? I have not been back to NIH and I am no long receiving IVIG due to my reaction to it. I am currently on an ACE inhibitor and Singulair. So far so good but I am still having minor attacks, no hospitalization required.

Ritz, You would do yourself a huge favor by booking a visit to NIH as soon as possible. It's important for Dr. Druey and team to understand WHY you've had the reactions you've had in order to have an intelligent discussion of alternative, targeted therapies for those few SCLS patients who appear to be intolerant of IVIG no matter the brand and manner, timing or speed of infusions.

Sounds like a worthwhile visit David

John - I wish they had branches around the world so everybody could have access to it. David