Email a copy of 'Steps Toward Understanding Rheumatoid Disease' to a friend
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E-Mail 'Steps Toward Understanding Rheumatoid Disease' To A Friend
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WOW is all I can say Kelly…what an excellent article packed full of facts and new information! I’m making copies to give to my rheumy and GP…thanks once again for your efforts on our behalf! xo
great Nancy – you’re always on the front edge of things! Make sure you see all 6 pages – I need to make some more links to it so it will be easy to find.
This has taken months, but it’s just the beginning. I’ll work on getting it into a print resource next year (after we get the book formatted & published).
Tremendous resource. Now, how do we get this in the hands of medical professionals?
Also have to take the opportunity to thank you for the incredible work you do on behalf of PRD.
hi Donna. great topic. I agree with Nancy’s idea to print out pages until I have something published in print. The new book will focus on the disease itself & that will also help improve our care if we get it into the hands of our docs.
In a way it’s not “fair” that it’s in the hands of patients to get the right info out – but things in life are often that way: they just “are” the way we find them when we get here, not the way we think they should be of course. At this point, patients know the most about this disease because we live with it. What’s amazing is that with this large online community, we’ve been able to compare notes & see we aren’t alone – at the same time have access to tons of research thanks to the internet – and we are getting a clearer picture of the disease.
Perhaps making a master copy of the toolkit available online that can be downloaded and published locally would be a good idea. I’d like to have a copy with a manuscript cover – giving appropriate recognition to the tremendous work of Kelly, RAW, and the team.
I can see sending a link to this document to the Canadian Rheumatology Association for distribution as a link on their website and to the many patient associations/agencies.
I see sending a hard copy to all the rheumatologists in Canada – we only have about 250 of them. I will volunteer to personally work on the distribution of this document Canada-wide when the timing is right.
Agree – if we had the information in a .pdf format – it would be easy to download and print copies to distribute; then also include the website address to this page to access all of the various additional links of information. This could be something to hand out right now until a nicer publication could be produced. Pdf files are easy.
Congratulations on the publication of an OUTSTANDING toolkit !!!!!! The toolkit is professional, accurate, easy to navigate and INVALUABLE in providing accurate and thorough information about RD. Dispelling the myths about RD is a huge undertaking and you’re doing a brilliant job, Kelly and team. THANK YOU !!!!!!
Thank you for putting this toolbox together. I am scheduled to see my Internist this week to discuss her role in my care. I know this will give us both a full list of items to be sure that we are watching.
It also gives me an objective way to measure the care that I am getting from my Rheumatologist.
I appreciate this work you are doing so much. Thank you from the bottom of my heart.
I was caught by the anecdote about the lady with RA only in her wrist. My FIL related to me a few years ago that his doctor informed him that he has a touch of RA, but only in his hands. As of now, it is still only in his hands, and he only takes Aleve if needed.
I cannot argue with him, because he adamantly believes his doctor. After all, a doctor is supposed to know these things. But I strongly suspect that it cannot possibly be Autoimmune Arthritis. Therefore, I know that there are still general practitioners out there that have not been educated over the years on the current understanding of the course of Rheumatoid Disease and the difference between RA and Osteo-Arthritis.
Thanks again Kelly for a great resource!! Information like this gives us the opportunity to have a discussion with our rheumatologist and other health professionals. How true it is that they need to work together. Not once has my rheumy said anything about my high blood pressure, but my blood pressure was always low before, and I know it is RD related. I have to take it upon myself to make a heart-related appointment with my PCP.
Also, you struck a cord with me when you say that arthritis is a symptom of RD, it is not what we have. Wow!! I just posted something on my Facebook page because of a local marathon that was run to benefit the Arthritis Foundation and their theme was to encourage people to “just get up and move.” Move?!? Really??! Is that all there is to it?? My rheumy specifically told me not to exercise until my disease was under control. Further exploration of their website lead me a lot of information that didn’t apply to me and quite frankly, for someone with RD, was just ridiculous and useless. It only helped to further the point that is so much more to our disease than what they would lead the general public to believe.
I grit my teeth and try not to yell, “IT’S … NOT … RHEUMATISM.” But the people I know who “have that in their elbow” do genuinely have pain, and they don’t deserve my yelling at them. So I yell in my head while outwardly I gently try to explain that it’s an autoimmune disease.
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