I am delighted to let our community know that Dr. Kirk Druey at NIH is turning his attention to the study of SCLS in children. This is an age group that has never received much attention from the medical community probably because, as I was told 7 years ago when I first sought to learn everything there was to know about SCLS, children "almost never" get SCLS -- or else "they quickly outgrow it." As I have come to learn, however, that is not true. To begin with, we have ELEVEN parents of children who are members of our RareShare community! Considering how many adult member-patients we have -- fewer than one hundred -- that is a relatively large sub-group. If you are interested in contributing your child's medical history for evaluation by NIH, and/or if you would like to have your child examined by the experts at NIH, please contact -- and better yet, have your child's primary doctor contact -- Dr. Druey at _kdruey@niaid.nih.gov_, with a copy to his nurse/assistant Laura Wisch at _wischl@niaid.nih.gov_, at your earliest convenience. Dr. Druey's full contact information is: Kirk Druey, MD, Chief, Molecular Signal Transduction Section, Laboratory of Allergic Diseases, NIAID/NIH, 10 Center Drive Room 11N242, Bethesda, MD, phone: 301-435-8875, fax: 301-480-8384, email _kdruey@niaid.nih.gov_ I know that several of our parents of SCLS children are already involved in this study, and I have reached out directly to others who have provided their email addresses, but we have a few who can be reached only this way, through an open appeal that I hope they will read. Many thanks in advance for what I know will be everybody's full cooperation with this pioneering study of SCLS in children.

Hi Arturo, What's a good new for all children suffering of SCLS ! So as it was the case for me since my first attack in 1954 as I was eleven, this possibility was always denied by the medical profession which consider that SCLS will only appears by the adults about forty and could not have a family form. Or, both, are present in my family since my grandfather died in 1925. So as I have the chance to grow and to be always alive, and can give a lot of information about the development of this pathology which, I hope, could be helpful to Dr DRUEY and his staff. Many thanks for having create this forum and all what you do to make advance the knowledge of this rare disease.

That's wonderful news. I found myself wondering not too long ago if perhaps this syndrome was not as rare in children as previously thought...considering the amount of parents that have joined in the past couple of years. I can't even imagine what it must be like for a child to have this problem.

My daughter has seen Dr. Druey . I believe she will be part of this study.

I'm sorry it has taken me so long to see this but I will be contacting my son's Immunologist so that she can provide Dr. Druey with whatever information he needs for his study. Thank you for bringing this to our attention.

I am really wondering if all the times I had the "flu" so bad when I was younger was really SCLS.

It seems strange that SLCS appear in the middle age and young children. Does it not occur between these ages or are the cases between these age brackets being missed?

I have wondered the same. Isn't the average age of onset around 43 years of age? One of the scientific papers stated a figure like that I believe. I was right at that age when I had my first episode and diagnosis. Don't know if that average age includes all children and others that are older and it just averages out to mid--low 40's..... or if most people actually get the symptoms around that age? And for some reason the children express symptoms earlier and the adults that get diagnosed have some sort of genetic mutation later in life where we suddenly have an attack? I beleive Dr. Greipp/Dr. Durey had written or discussed 'genetic mutation' as one explanation and had documented the MGUS as a fairly common(80%) thread. Is the MGUS prevalent in the children as well? Not sure we are going to get any 'big revelatiions' out of my questions.....but am curious.