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What I have learned about SCLS

aporzeca Message
16 May 2009, 01:53 AM

I recently just barely survived my third very serious episode of SCLS, and since I have learned a few things along my four-year journey coping with SCLS -- by reading most of the relevant literature, speaking to many scientists and medical doctors, and from the information that you all have provided -- I thought I would share with you my tentative, personal conclusions about this mysterious illness. Keep in mind that I am no scientist -- never mind a medical doctor -- so please do not consider the following to be medical advice. These are ideas for you to discuss with your own doctors. 1. How is it that we catch SCLS? I think we experience some kind of mid-life genetic mutation, that all of a sudden weakens our immune system and makes us vulnerable to colds, the flu, stomach viruses, stress, etc. and triggers these (curiously self-reversing) systemic capillary leak episodes. 2. Can SCLS be cured? I think it is best to think of SCLS as incurable, and thus it behooves us to remain forever vigilant. To those of you who have not had an episode in several years I say: Congratulations and I wish you the best – but don’t become complacent, as I became, and do plan for a possible new episode. As you can read in this website, and in various published articles, SCLS patients have tried all kinds of medications and procedures and most of us, sooner or later, have been disappointed by the results. In my case, I have now stopped taking Theophylline and Terbutaline because, as is also true of so many other patients, these medications neither prevented nor lessened my last episode -- and, besides, they have unpleasant side-effects. 3. Can an episode of SCLS be stopped or minimized once it has started? I think it can be, provided it is identified during the first 24-48 hours, before the capillary walls leak massively -- which they tend to do in the following 24-48 hours. Since most of us are given strong doses of steroids and other medications once we are so sick that we must be hospitalized, it may make sense to take one or more of these medications at home as early as possible. In my case, my doctors decided to have me take high doses of a steroid (Prednisone) early on, and in so doing I have succeeded in minimizing two episodes of SCLS. I now carry Prednisone with me wherever I go. 4. If early detection matters, how can we confirm that we are having an episode of SCLS? I used to think that I could recognize it by its symptoms (in my case, a runny nose and a flu), but ahead of my last episode, I had gastrointestinal discomfort (a stomach flu) – and therefore I missed it until it was too late and I fell unconscious. I also thought that I could spot an episode by measuring my blood pressure, but I have learned that it usually does not drop much until very late in an episode, when the blood pressure collapses -- and so do I. Therefore, blood pressure readings do not provide me, at least, an early-enough warning. 5. So, do I have any new ideas? Yes, what I am trying now, at the suggestion of my doctors, is a portable device that allows me to prick my finger, take a blood sample, and measure hemoglobin concentration in seconds. It is supposed to allow me to detect the kind of upward trend in hemoconcentration that takes place during every episode of SCLS right from the beginning. These devices are accurate enough to be used in blood banks and hospitals, but they are expensive (about $1,000, though you may be reimbursed by your medical insurance company if you have a doctor’s prescription for it) and they are not licensed for home use in the United States. (I purchased mine via a compassionate doctor who ordered it for himself.) The one I bought is called HemoCue, is made in Sweden, you cannot buy it directly, and you can read about it at It is sure better than waiting for hours at an outpatient laboratory for a blood draw and the results, never mind going to and waiting for hours in the admissions area of a hospital emergency room during the night or a weekend -- just because you don’t feel quite right and you suspect you might be having an episode. 6. How does one make sure that the ER and ICU doctors will admit you and will know how to help you during a serious episode of SCLS? Since I tend to live in and travel between New York, Washington DC, and central Pennsylvania, I have a doctor in each location that I go visit for a check-up whenever I am in town. That way, there is someone I can call on in an emergency who knows me and will get me admitted to the ICU without delay. The next problem is how to make sure that the ICU doctors will know what to do. This is, I have found, the bigger challenge, because ER and ICU doctors rotate, so chances are you will not get the same doctor who helped you last time -- and thus they will be completely ignorant about SCLS. What I do, especially when I visit a new area, is take with me photocopies of the material on SCLS that is now in the NORD website (, in the Mayo Clinic website (, and in this RareShare website (, and I give it to the ICU doctor who is on duty. I also have a one-page instructions sheet written by one of my doctors, which we are perfecting and will soon make freely available to the RareShare SCLS community. I suggest you prepare yourself and do something similar in case you are admitted to the hospital -- even one you have been to previously -- but I can tell you from painful personal experience that there is no guarantee that the ICU doctors will take the advice they are given. My last set of ICU doctors nearly killed me trying to save me.
rnolan Message
16 May 2009, 04:52 AM

Arturo, once again many thanks for detailing the above in formation. I am pleased you are again on the mend and that you are able to share with us! It really is a very mysterious syndrome? I have so many questions all the time going on in my head and unlike you I have only had one major attack however I do wonder about mini attacks as just lately I have been experiencing what I call run out of energy attacks, I just feel like I am running on empty all the time, sore legs and unable to sleep soundly! Unlike you I can't attach my attack to a cold or flue I just got sick very quickly. I did however have a bad bout of tonsillitis a few weeks before my attack. Still I am lucky now to be back at work and have a new appreciation for life as I am sure you will too. Take good care of yourself Ruth
clswalt Message
16 May 2009, 06:39 AM

Arturo I tend to agree with your comments. In fact, it is what it is. I hope you and all others with CLS are still actively trying to solve this puzzle. I am. I have CLS and I plan on not going down again. Since I am an engineer, I think this is just like any other problem to solve. You have to weed out what doesn't start it so we can better understand what does. We as CLS patients have to work together to solve this one. I don't see any doctor having the time in trying to solve this from what I have read. Doctors can only study cls when it happens and we don't share just one doctor. Dr. Greipp seems to be the best at it. But again, he does not have the means to question us enough to solve it. There is no way, in my mind, that just a few people out of 6,706,993,152 people in the world (July 2008 est.) have CLS by chance. Something is common about us and I really would like us to band together and try to find the common denominator ourselves. I mentioned before setting up a spreadsheet, tracking our lifestyles, foods, drinks, medical problems, etc. We are about the same age and a lot of us had our first incident around early 2005. I plan on celebrating my 5 year CLS anniversary Feb. 4, 2010. That is supposedly my 5 year mortality rate of CLS. I also plan on 6, 7 and so on, which I promised my wife. Like you noted, we can't even depend on ER doctors when we go in. Myself and others are having mild incidents, but like you, the bad one may be coming. I will not sit back and just wait. If anyone is interested in tracking our info and maybe finding the common denominator, please e-mail me at: I hope I have not come across wrong. This website is the most encouraging thing that I have experienced since finding out I have CLS. Just reading all your comments has made me realize i am not alone. I just don't see any future medical research happening soon.
allenoverland Message
18 May 2009, 01:12 PM

Dear Arturo, Thank you so much for sharing your insights on your latest SCLS episode. Those of us with this affliction all search for answers to understand our condition and to prevent future episodes. The syndrome reminds me of a famous quote Churchill made about is "a riddle wrapped in a mystery inside an enigma." The more we learn about it the less we I have been blessed in only having one very minor episode last year in the past 5+ years. I think the first point you mentioned is absolutely true. We all experience something in our mid-life years brought on by illness or stress that changes our genetic makeup. To counter the effects of the syndrome I work very hard to reduce stress in my life, to exercise, eat right and get enough sleep, the latter being the most important for me. I think that we finally have a good team of researchers looking into this condition with Dr. Druey at NIH and Dr. Griepp at Mayo and just as important we have a real community thanks to you Arturo. I echo what Walt said that at least we are no longer alone. Take care and I wish you and everyone on the Board good health. Allen
kmiclon Message
19 May 2009, 06:09 PM

I am so thankful for this site! This is all such good information, and I would love to start tracking info with the group. Seems like a step we can take on our own that might assist Dr. Greipp & Dr. Druey. I am actually writing from the Mayo Clinic, having seen Dr. Greipp over the last 2 weeks. I highly recommend coming out to MN if you have SCLS (or any other medical mystery/crisis) - the Mayo philosophy is AMAZING. How much time did we all spend with doctors who had no idea what was wrong or what to do about it, and didn't really have the time/inclination/motivation/curiosity/gump-tion to follow thru and help us figure this out?? (I have updated my profile with the details of my visit - if you've got an hour to kill :-) I am staying to have more tests (& possibly surgery) on my heart which is 'stiffened', a result of the SCLS, we believe. So, maybe I'm adding this to the info for SCLS? The mysteries of this disease continue to unfold - -