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http://www.sun-sentinel.com/sfl-35mandydawson,0,7040895.story
Lots of things bother me about this story – her assumption that RA is unbeatable, the ignorance the general public has about the disease, and the lack of discussing treatment options…
That made me so sick and mad that I contacted the paper via email. I told them this attitude in America towards so called “auto immune diseases” is a horror to witness. I explained that there are “rogue” groups out there that have found decent solutions to so called “R.A.” and the evil cousins associated with it. I told them enough is enough. Just because the medical establishment and their co-conspirators in big pharma refuse to find a cure, doesn't mean the masses have to suffer their inaction any longer. I told them about A.P. and the studies linking A.P. to great outcomes for the victims of rheumatoid *infections*. I'm sick of the inaction in our country. We used to CURE diseases.. Now we MANAGE them to the benefit of a few. Thanks for posting that, Joe. It woke me up.
Yikes, I see what you mean about a lot of things being disturbing about this article. They certainly seemed to go out of their way to portray her in a somewhat less than dignified way. I have to say, if she was announcing that she was fighting breast cancer, I truly believe the tenor of the article would be completely different. I can say this because as a cancer survivor, I felt a lot more encouragement and support in that fight than in the one I now face. The public is much more compassionate and supportive of a fight against that disease. I don't know why, but I do know that the medical community has not made much effort to educate the public about this disease or develop any sensitivity toward patients and families dealing with it. In our community, we are alone. Thank goodness for the internet.
Can we find out her address and send her a copy of Henry Scammell's book? It sounds like she is really severe, I can't imagine having a high profile job and having people see you go downhill like that. Sounds like she has problems with pain management as well. I wonder if she's on a biologic or not; it doesn't sound like it, altho I can't imagine why she wouldn't be. I wonder if she's heard anything about AP?
I agree, if it was something like cancer the article would have had a different feel to it. People see cancer as life threatening, but because arthritis doesn't kill quickly, it's not as important a disease. If people only understood that arthritis IS life threatening in a different way; we may not die, but our lives can be taken from us.
Maybe we should flood our local newspapers with editorials about positive solutions for these chronic diseases, citing Dr. Brown and others. Someone smart and articulate here could write it, we could all sign off on it, and submit it to all our local papers. I understand that the RBF could not attach their name to it, but we as individuals can. Any volunteers?
Well, Linda, I have thought about it. I have started doing a little bit of free-lance writing for a local new magazine, and I have thought about asking my editor if I could do something like that, but since I am just getting my feet wet, I have not wanted to push it. Besides, I am working hard on getting well right now (and still homeschooling my teens), which is enough for my plate right now. Should I have some longer times of wellness, I will likely pursue it. I would be interesting in helping in that manner if others want to proceed with it now. It is so hard to tell how to devote our energy to helping, isn't it?
wow, I really feel for this senator. However, everyone on this board and those who use A.P. educated themselves and researched with a mission to cure their own A.I. disease. Senator, time to get off the pity pot and go to work for yourself and fellow A.I. folks. What a platform she has to bring A.P. to light for people in need. Remember, we don't work for these senators, they work for us the taxpayer. How fortunate we are to live in a country where we can persue alternative options where they can be made to be first line treatment instead of just management of symptoms!
Blessings
Key
If anyone is interested in contacting her, I went on http://www.flsenate.gov and found this page about her, it lists an email address. I hope this works, I've never used tiny url before. http://tinyurl.com/yohoab
Thanks! I'm doing it. I'm tired of R.A. being the big mystery buck maker. If TB were not already solved, it'd surely be classified as an “auto Immune” disease today. Oooh, look- you're wasting away because your immune system is turning against itself. SUCH BUNK!
I just sent her a quick email, told her I am not very convinceing,also said I (had) severe RA and doing very well and for her to go to http://www.roadback.org and that I believed she wouid be glad she did. I did not want to be p:headbang:ushy. The best to all……………………JoeRA
Idea….About contacting her and informing her about “The New Arthritis Breakthrough.” I'll bet the newspaper would pass on an address and telephone number to her. Or, do a search and find her office address and phone number…. It might get nowhere, but it also just might get there and strike a chord.
AF
Tiff…..I'd be happy to help, altho my story is about as far from successful as it could be right now. Maybe as a case for starting abx early and not as a last resort. I'm working on a poem with my sister, whose working on her master's in creative writing. It's about the constant fear we live with that our dx is coming back, and the effect it has on our lives when we fall out of remission.
AP/MP could stop that vicious cycle.
I completely understand that your life is crazy now and that you have to pick your battles. Homeschooling and teenagers- you're a brave, brave soul! I know, we often only have enough energy to do what it necessary, sometimes not even that much. I really appreciate your willingness to help down the road.
linda
P.S. I was a math ed major before I had to quit (temporarily, I hope). You've probably got this covered, but if you ever need an online tutor, free of charge, I'd be happy to help. While I was in school I tutored at the math lab at the college I was attending- I really miss it- you'd actually be doing me a favor.
Senator Dawson has a work e-mail : dawson.mandy.web@flsenate.gov
I sent her an e-mail encouraging her to check the roadback website and telling her how well my daughter has done on the antibiotic therapy.
Who knows if she will check her work messages or whether she'll read up on AP. I hope she will. Can only try to pass the word.
Since my daughter with RA and AS lives in Florida, I am very interested in what happens to this woman. Now I have a dumb question. I haven't been getting on here much since the format changed so drastically…I don't know how to navigate it. How can I get to more posts on a subject than show up on one screen? I'm feeling really trapped with this new board! Help!
stillthe1
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