There are several reasons behind this problem that we encounter and unfortunately there is no way to fix all of them. But we do have an option The International Foundation For Autoimmune Arthritis has a page where we can report any article, advertisement, column or broadcast that is providing false or misleading information about Autoimmune Arthritis I will attach the link at the end of this page. They have corrected pages already thanks to people like us sending them in.
I will talk about a few different reasons that we find so many pages with claims of cures or remission.
1 The biggest problem and probably the easiest one for others to make is people referring to Rheumatoid Arthritis when clearly they mean Osteoarthritis. Now this is a clear sign for those of us living with the disease to stay away from any recommendations the page makes we know they have no knowledge or education in our disease. The hard part is people not living with our disease come across things like this and believe it as truth. Dr Oz is a big one that so many people believe he is an expert on everything and he has made exactly this mistake (he did correct it in a short sentence on his page) but the people watching that show now believe obesity can cause Rheumatoid Arthritis.
2 With that I will lead straight into #2 the sentence I just wrote Obesity can cause Rheumatoid Arthritis, which again is incorrect obesity can lead to osteoarthritis, anyways that could possibly now come up out of context if someone were to directly search those exact words. To many people that is enough they don't go to the page to read the whole story to realize that is not what was truly being said. I think this happens a lot more than we realize. People don't have a lot of time they skim they find what they think are their answers and then they share and share and share again. Seeing the pattern yet?
3 This is the one that hurts me the most because it has to do with lying. I hate lying I always have as a child my stomach would get so upset when I knew someone who had told a lie. I have never been able to lie, it's just not part of who I am. I am a person with a really big soft heart and Lies really hurt my heart. So here it is #3 Salesmen are being paid to research diseases and post how it cured their ailment and post often. They want their product to get the most hits with search engines so they make up consumer names and stories and boost their own product.
4 This is something my rheumatologist talked to me about because I asked why do we see so many claims of cures and remission with internet products. She said that there are many Drs who diagnose patience with RA without adequate blood tests etc and that patient may not have had RA to begin with, sadly this happens a lot. Then the misdiagnosed patient takes some supplement and wham they're cured! Well of course if they never had it to begin with. I'm not saying they didn't have something wrong with them, and I'm not saying that the supplement they used didn't make them feel better, I will say I am happy for them that they found something and got better. The unfortunate part is that now they go around stating that they cured their RA that they most likely never had.
5 This is my favorite because it reminds me remission is sometimes possible, though not the norm it is sometimes possible. I need these small pieces of hope to keep me going sometimes. People who go into remission because sometimes people are lucky that way and before they went into this remission they tried let's say gluten free; so because these simultaneously happened they figure they were cured. They go all over and shout it from the rooftops, I mean wouldn't you if you thought you had something that could really help us all. They get on all the chat groups and tell everyone how great they feel and how you can do it too. But it is Rheumatoid Arthritis and the other shoe has to drop right...I have had a person who came back to a page I frequent and apologize profusely she went gluten free and found she was feeling great cured of Rheumatoid Arthritis and had ranted to everyone you must try it it really works etc. well unfortunately for her her RA flared up again with a vengeance, while she was still living a gluten free life. So the poor thing had to come back to her groups with a little egg on her face, but I feel she is an amazing brave woman for coming back and letting us know she made a mistake and she was sorry, kudos to you I'm proud to have you in our mixed circles. I have also seen others who have made the same mistake and have returned to the groups to let us know they were mistaken.
I am sure there are other ways these postings come about and become so popular that we worry all anyone will ever know is how rum soaked raisins cure your arthritis. We worry the lies will outnumber the truth. So what we need to do is RAISE AWARENESS...SPEAK THE TRUTH...talk to people and let them know what it's really like, what this disease Rheumatoid Arthritis really is: daily fevers, flu like symptoms, fatigue (like you have never known), pain in every joint in your body, headaches, hearing loss (yes there's a joint in there too), organ damage from swelling, heart disease, rheumatoid lung, the list goes on and on even death.
Here is the link to report misinformation to IFAA (International Foundation for Autoimmune Arthritis)
http://www.ifautoimmunearthritis.org/Awareness_Hotline.html
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