Hi Pat:
Specifically on the web are brief articles on sarcoidosis. Too many of the online articles are too short, to the point (but not the correct point...) and suggest to all that a dose or two of steroids and someone with sarcoidosis is *good to go* or that sarc will always seem to burn itself out. So many articles leave it at that and this is too unfortunate. A study just released by SAS: Sarcoidosis Awareness Society (UK) suggests the point I make. They reference lack of good information about sarcoidosis on the net in this study. This report was just released on their one year anniversary yesterday Feb. 04, 2010. The fact that this society is only one year old is in itself a tragedy! However, the study is basic and yet very good and spot on if I may say so myself, and I do! The study also reports to a tee... many of the symptoms us sarc patients suffer along w/other difficulties we are having with the medical communities around the world, UK and USA included. (I am not sure I can add a link to this but will be happy to provide a link if you request.) Again, the all too short, no explaination needed.. type of online information is so very misleading to all. Us sarc sufferers encounter too many people, friends and family that have a misguided perception of sarcoidosis and how it effects us. We are finding *old wives tales* are all too common among too many people, including the medical professionals. In turn, we suffer....more. With that being said it is up to us to champion our own health care with sarcoid. The study suggest: unnecessary surgeries to remove *cancer* organs is too wide spread. I agree, its not cancer...its sarcoid. Sarc is NOT cancer and yet can invade most organs in the body. A biopsy of the tissue would resolve this issue and yet is not done. This enormous fact...is usually left out of net type articles, along with many other *true* facts. Another case in point: the article above written by Linda states that *interferon* could be a contributing factor inducing sarcoidosis. This was the very first I myself have read of this. Again, I have been researching online since Nov 09. I also am involved in another online support community and have not seen this reported. Bravo!
Hope this helps and keep up the wonderful work to get the word out correctly. We are all grateful to you! Leslie Charlotte, NC
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Hi Pat:
February 5, 2010 - 3:22amSpecifically on the web are brief articles on sarcoidosis. Too many of the online articles are too short, to the point (but not the correct point...) and suggest to all that a dose or two of steroids and someone with sarcoidosis is *good to go* or that sarc will always seem to burn itself out. So many articles leave it at that and this is too unfortunate. A study just released by SAS: Sarcoidosis Awareness Society (UK) suggests the point I make. They reference lack of good information about sarcoidosis on the net in this study. This report was just released on their one year anniversary yesterday Feb. 04, 2010. The fact that this society is only one year old is in itself a tragedy! However, the study is basic and yet very good and spot on if I may say so myself, and I do! The study also reports to a tee... many of the symptoms us sarc patients suffer along w/other difficulties we are having with the medical communities around the world, UK and USA included. (I am not sure I can add a link to this but will be happy to provide a link if you request.) Again, the all too short, no explaination needed.. type of online information is so very misleading to all. Us sarc sufferers encounter too many people, friends and family that have a misguided perception of sarcoidosis and how it effects us. We are finding *old wives tales* are all too common among too many people, including the medical professionals. In turn, we suffer....more. With that being said it is up to us to champion our own health care with sarcoid. The study suggest: unnecessary surgeries to remove *cancer* organs is too wide spread. I agree, its not cancer...its sarcoid. Sarc is NOT cancer and yet can invade most organs in the body. A biopsy of the tissue would resolve this issue and yet is not done. This enormous fact...is usually left out of net type articles, along with many other *true* facts. Another case in point: the article above written by Linda states that *interferon* could be a contributing factor inducing sarcoidosis. This was the very first I myself have read of this. Again, I have been researching online since Nov 09. I also am involved in another online support community and have not seen this reported. Bravo!
Hope this helps and keep up the wonderful work to get the word out correctly. We are all grateful to you! Leslie Charlotte, NC
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