Dear SCLS Community Members:
I wish you all very happy year-end holidays, and want to encourage you to let us all know how you are coping with this illness -- and if you found any treatments that seem to be working.
For my part, I had just one episode during 2008 (2 in 2007, none in 2006, 1 in 2005), and was able to minimize it through the immediate intake of stress doses of steroids -- in my case, 80mg of Prednisone per day for 4 days right after the first flu-like symptoms appeared, then tapered off to no more medication in the following 4 days.
This was done under strict medical supervision, including daily blood lab measurements, and my capillary leak and hemoconcentration were quicky reversed, obviating the need to be hospitalized.
While I know better than to extrapolate from just one observation, my prior SCLS episode had likewise responded well to stress doses of steroids administered intravenously once hospitalized.
Obviously, those of you who have the chronic variety of SCLS, with many episodes per year, would likely not be allowed by your doctors to become reliant on steroids, because they have well-known damaging effects over time.
In terms of advancing our understanding of the root causes of SCLS, you should know that in recent months, and at my urging, the National Institutes of Health here in the United States has begun to look into this illness. In the months to come, there may be an opportunity for you to be examined by NIH scientists, and to give blood and other samples for them to analyze.
At this stage, they are by no means looking for a cure for SCLS but, rather, wish to understand why our capillaries leak for a few days and then stop leaking -- a strange but scientifically interesting phenomenon. And I will certainly let you know whenever the NIH scientists are ready to hear from those with SCLS willing and able to come to Washington DC for an examination.
I wish you much better health in 2009.