Hello,I'm a medical student from Rome and I'm nice to meet all of you. I'm writing my bachelor thesis about SCLS and especially about the traitment with IVIg. If you can help me I would like to know some informations: -the number of people with SCLS in the world right now. (I could find 154 cases searching in the medical literature from 1960 to 2014) -the number of patients who are doing a traitment with IVIg and how many of them are able to control the crisis with it. Thank you in advice for you help,I will appreciate any kind of information about your experience with IVIg.

Thank you for your interest in our Community! I suggest that you start by visiting our Disorder Resources section and reading the informative literature highlighted there. In terms of the likely number of patients, a rough estimate would be one per million, making SCLS one of the rarest of rare diseases. One cannot go by the case-study literature; many of the patients in this Community are not covered by it -- and a number of the early patients described have died. The impression we have is that in the past few years, most patients with recurring episodes of SCLS have been migrated to an IVIG-focused therapy. At present, the only scientist performing laboratory studies on SCLS is doing a survey of IVIG users, and based on fewer than 25 patients, virtually all have been able to stop or minimize their episodes. However, we do not have, and we will probably never have, a proper, double-blind, randomized statistical study of the efficacy of IVIG. This therapy seems to be working so well for patients who have tried everything else without success that it would not be ethical to give any of them a placebo. For additional information, write to Dr. Kirk Druey, _kdruey@niaid.nih.gov_

Thank you very much for your answer!

It is wonderful that you are interested in SCLS, and gathering information. I do not need IVIG, as my episodes are not frequent. When they have occurred, they were very severe, and went undiagnosed for years Many doctors do not know about the disease or treatment. Prednisone has helped me reverse the terrible swelling. I am one of the very fortunate people. This site is a great resource, and I hope you get the information you need. The more people who know about the disease, the more helpful for those who suffer with the effects. I am 70 years old, and very happy to be this age.

Thank you very much for your experience!