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Happy Holidays! -- and an update

aporzeca Message
24 Dec 2008, 01:59 PM

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. Arturo
nwbsaw Message
17 Jan 2009, 09:49 PM

Thanks for the up date Arturo. This is Wendy from Burley. Nolan has had a rough few months. After having mild epispodes of low B/P about every five days for months, he started to have more serious ones at the end of October. On the first of November, he was Life Flighted-again to Salt Lake City where he spent almost three weeks. He had very low blood pressure and was given fluid to keep him alive. Unfortunately, he had to have fasciotomies in both arms and his kidneys shut down and he is still on dialysis. The fasciotomy wounds have finally healed. He has recovered most of the function in his left hand but has decreased movement and sensation in his right hand. Interestingly, he has quit having any episodes of low B/P. What a strange and mystifing disease! The only thing that has changed is he is on dialysis. If he is able to we would be interested in going to NIH. It would be nice to get some answers as to at least why he is or is not leaking. We wish every one the best. Wendy
aporzeca Message
18 Jan 2009, 04:21 PM

Dear Wendy & Nolan: I'm very sorry to hear about Nolan's severe recent episode, but if it is any consolation to you, it is not unheard of that kidney function returns to normal after a while (as it did in the case of another member of this community, who like Nolan also has very frequent episodes) and, of course, the damage to your limbs could have been much worse (as was true in my case). Please contact me directly at for further details on the NIH option.