Guest guest Posted September 12, 2005 Report Share Posted September 12, 2005 Joan, There really is a wealth of information out there... start with Hopkins' own website and go from there: http://vasculitis.med.jhu.edu/typesof/churgstrauss.html There is also a CSS group, like this Samters group. In fact, there is a national group as well as an International group, I think. I've been diagnosed "officially" since August, so am still researching a lot myself! Good luck with it! Billie in TexasJoan Miles <joaniem@...> wrote: searching for anyone that is a wealth of information about Churg Strauss and the best places to go and best doctors....just got an 'unofficial' diagnosis and heading to the Vasculitis Center down at Hopkins and don't really know what to expect..... Joan, 36, PA__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2005 Report Share Posted September 13, 2005 Joan: don't miss outon the css association web site. It has a lot of links on informational articles for you. It is www.cssassociation.org Carol CSS searching for anyone that is a wealth of information about Churg Strauss and the best places to go and best doctors....just got an 'unofficial' diagnosis and heading to the Vasculitis Center down at Hopkins and don't really know what to expect..... Joan, 36, PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2005 Report Share Posted September 13, 2005 thanks, Carol. That's a great website. CSS searching for anyone that is a wealth of information about Churg Strauss and the best places to go and best doctors....just got an 'unofficial' diagnosis and heading to the Vasculitis Center down at Hopkins and don't really know what to expect..... Joan, 36, PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2007 Report Share Posted December 2, 2007 Back in April as I was having such a horrible time with severe flu symptoms and acid reflux, vomiting acid, migraines, nightmares, blurred vision, doulble vision, cognition issues, and a pain behind my left eye like I had been hit with a baseball bat, cold sores.... etc... as I went to my Dr. for a referral to the eye specialist..thinking something was wrong with my vision. My Dr. took notice of my ankles as she was walking out of the room. Neither she or I said anything about them. It was only a few weeks before going to her that I developed a skin color change on my feet and ankles along with a huge collection of vericose veins. I just recently showed my ankles to a new Dr. I am seeing and he asked why my ankles looked the way they do...I answered him.. They became that way soon after being exposed to THE HUGE AMOUNT OF MOLD at my workplace! he had just diagnosed me with ASTHMA I just came across an article: PLEASE READ Churg Strauss Syndrome: Research indicates autoimmune disorder Who gets it? Usually, a person already has asthma when he or she develops Churg Strauss syndrome. What brings on the syndrome is not yet clear, but research indicates it is an autoimmune disorder, meaning the body's white blood cells, which usually fight off diseases, begin attacking healthy tissue. It affects males and females equally. How is it treated? Since the syndrome seems to be caused by a problem with an overactive immune system, medications are given to slow down (suppress) its activity. Prednisone is the medication usually used, but other immunosuppressive drugs such as azathioprine (Imuran), mycophenolate (CellCept), methotrexate, or cyclophosphamide (Cytoxan) may be added if needed. High doses of medication can be given intravenously in severe cases. Symptoms usually start to resolve quickly after starting medication, but treatment can last for 1 or 2 years depending upon how severe the syndrome is in the individual. What is the future for research? Discovering what causes Churg Strauss syndrome will help doctors find a way to control it, or even prevent it from occurring. It does not seem to occur in families, so although genetics may play a part in its development, it does not seem to be inherited. It is possible that exposure to environmental toxins may play a role, as it does in other autoimmune disorders. The syndrome may be caused by an overactive immune system that was set in motion by some kind of infection. Some or all of these factors may be involved; it will be up to research to identify the precise cause(s) of the disorder. Quote Link to comment Share on other sites More sharing options...
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