Can I ask a question to everyone on this forum? Are any of you Vietnam War veterans or children of Vietnam veterans? The soldiers during that time period were exposed to Agent Orange...which in turn has caused a lot of problems for not only veterans, but their children. This could be maybe a cause of SCLS???

The probability of something like Agent Orange being a cause of SCLS is infinitesimaly small, I would say. First, SCLS has been around since before Agent Orange was invented; second, it would be far more common than it is if it were caused by Agent Orange; and third, it would be prevalent in Vietnam and to a lesser extent among former U.S. soldiers and their offspring. On the contrary, rare though it is, isolated cases of SCLS have been identified in many countries around the world, and it affects people (like me) who had no direct or indirect exposure to the Vietnam War generally or to Agent Orange specifically.

Thoughts on the "Agent Orange" thing - I know nothing about Agent Orange in particular, but it is my belief that certain people with certain (?) immune systems, will overreact, if you will, to numerous exposures to likely quite an array of toxins by "overproduction of certain antibodies" or an overreaction to some antigen. (that others react differently to or not at all). When you look at conditions like Systemic Inflammatory Response Syndrome and just plain sepsis that leads to circulatory collapse - It's that element that causes a normally semi-permeable membrane (of a capillary) to become "overly permeable". Could be different things for different immune systems. I spent a year reviewing the extensive medical records of 13 people (10 years worth for each patient) who were thought to have "Sick Building Syndrome" . This was in late 90's - a lot has since been learned about this dx. that I haven't followed. These were 13 people who worked in D.C. for the EPA - scientists, lawyers, judges - who were disabled due to chronic exposures to mold, asphalt fumes and off-gassing of certain things in their offices. The ventilation systems in the offices had a lot to do with it. These people's lives were ruined - the array of symptoms and treatments for symptoms that exacerbated other symptoms - it is mind blowing what I read - every single office visit, every doctors note, prescription, test - every theory. It scares the crap out of me thinking of the possibility that there is something seemingly benign that could be causing this "capillary leaking" that is RUINING my life and mostly the inability for me to do what I loved (work) and to be a productive human being and role model for my daughter. I live in Florida - it's in the 90's with 10,000% humidity today and this is still Spring - I, again, will not be leaving my climate controlled cage, I mean, house. Sorry to be so negative - I usually try not to think about what's really going on.

For what it's worth - the Veterans Administration has declared multiple myeloma 'service connected' due to exposure to agent orange and the data suggest there may be an association between agent orange and myeloma. This could be relevant since a monoclonal protein is seen in almost all patients with myeloma is also seen in most patients with SCLS. That is not to say that I think agent orange causes SCLS - it is just to say the answers are not in yet. I tend to agree with Arturo - the chances of a relationship are infinitesimally small - Dr Phil Greipp

Interestingly enough my father died of multiple myeloma and he was a World War 2 Veteran. After his death at the age of 58 1981 there was a person? who contacted my mother asking questions around where dad had fought during the war as they believed there was some connection with War vets and multiple myeloma? Both my brother and I have the MUGUS protein and I now live with ISCLS so many questions and not a lot of answers... Maybe one day we will find the answers. Ruth Nolan Christchurch New Zealand