Question:
Did anyone out there read the June issue of Self magazine? In their article "Why are all these women sick?", they stated that: "The disease eventually attacks the heart and kidneys; more than half of lupus sufferers die within 15 years of diagnosis". Wrong, Wrong, Wrong!!! I think we all know that not everyone who is diagnosed gets internal organ involvement. Furthermore, the Lupus Foundation of America website says: " People frequently read in the literature that 80-90% of people with lupus live for more than ten years. Unfortunately, this is often misinterpreted as meaning that people with lupus live for only ten years. Let us clarify this. The studies that were done to arrive at this figure were done over a period of ten years. They followed patients with lupus from the time of diagnosis for ten years. At the end of these studies they were able to conclude that 80-90% of the people enrolled were still alive. What this study did not look at is what happened in year 11, 12, 15, 20 and so on. We know that there are many people living with lupus and have been living with lupus for 15, 17, 19, 25, 27, 30 and 40 years. This is not a disease that is universally fatal to all. THE MAJORITY OF PEOPLE WITH LUPUS TODAY CAN EXPECT TO LIVE A NORMAL LIFE SPAN." I was furious when I read their article and immediately sent them an e-mail with the correct information. Not only did I not receive a reply, but I just got the August issue and there is no mention of a correction or an apology. How could they say something so horrible and wrong and not even respect us enough to fix their mistake? I called and cancelled my subscription and sent another e-mail with the correct statistics, and voiced my disappointment in their journalistic integrity. I mean, I actually cried when I read the article, because I thought of all the people out there who might not have access to the correct information and would be terrified. If anyone else out there read the article and had the same reaction, please let me know. If you feel the urge to e-mail Self magazine, their address is lett…@self.com . Thanks, I just needed to vent. Everyone take care of yourselves! Laurie
Response:
<<If you feel the urge to e-mail Self magazine, their address is lett…@self.com .>> I can’t imagine what books the author of the article was reading. It had to be old ones. That’s particularly sad considering how easy it is to do research on the internet. Had the author bothered to check the Lupus Foundation website, she could have had much more accurate information. I agree that the article is a disgrace. I sent an e-mail to the address above to let them know my feelings. If enough people complain, perhaps they’ll print a correction. Sandra
Response:
Boy, this was confusing – I thought this was "Andy" of kitzbuhel fame. 
I thought for a moment – "Oh no! I’ve turned him into me!" Laurie, you’ll have to excuse the above – if you’ve been lurking you know what I’m talking about. to more serious matters. I think you did a wonderful thing. Do you know if the article is perhaps online? it may be that they put your response on a website but didn’t take up "precious space" in their magazine to correct the issue. But I would like to see this article and also respond to it. Someone on the group made a similar comment the other day – I know only because they had likely been told or read older information about life-expectancy for us. I also know Sandra and I and others have on many occasion had to help someone who’s doctor told them this misinformation. I wish journalists (no, not all, many are quite good and do have integrity) would use the proper resources for their information. This one may have talked to a rheumatologist rather than getting their data from the horses mouth – the LFA. Or they could have reinterpreted their data. I think some people deliberately overstate the risks of lupus to make it more interesting and scary. (not folks here – but poor journalists, the sensationalists desk jockey on your local TV station, etc. anyway – thanks for letting us know. I’m gonna look into it. *********************************** KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’
Response:
Laurie, another approach: Find the author of the article. Many authors now maintain their own websites. If you can contact the author and diplomatically explain the mistake that was made, he or she may be able to get a published correction in the magazine more easily than you or one of us can. However, I am still looking at their website to try to figure out what they do or don’t have on there. www.self.com (don’t everybody go there at once – you’ll slow me down) <G> *********************************** KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’
Response:
Thank you, I never even thought of that. I looked up both of the writers and they seem to be correspondents for the Boston Globe. That also happens to be where my boyfriend’s father works! Hmmm. Thanks for the advice, Laurie — If you can’t be a good example, then you’ll just have to be a horrible warning. * Catherine Aird- "KCat" <kcdoc…@ghg.net> wrote in message
news:03pgltg92n67cdi3qd92pabeklnla06bts@4ax.com… > Laurie, > another approach: Find the author of the article. Many authors now > maintain their own websites. If you can contact the author and > diplomatically explain the mistake that was made, he or she may be > able to get a published correction in the magazine more easily than > you or one of us can. However, I am still looking at their website to > try to figure out what they do or don’t have on there. > www.self.com (don’t everybody go there at once – you’ll slow me down) > <G> > *********************************** > KCat – I am not a medical professional. The contents of this post are
based soley on my experiences and opinions – Hide quoted text — Show quoted text -> http://www.ghg.net/schwerpt/mypage.htm > http://www.ghg.net/schwerpt/aslfaq20.htm > ("`-”-/").___..–”"`-._ > (`6_ 6 ) `-. ( ).`-.__.’`) > (_Y_.)’ ._ ) `._ `. “-..-” > _..`–’_..-_/ /–’_.’ ,’ > (()),-” (()),’ (((.-’
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