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8 Responses to “Rheumatoid Arthritis Problems, Anyone?”

    1. Keren says:

      Just read your book, you got a 5 star review on amazon uk from me! Thank you so much for such a meticulously researched and important piece of writing on behalf of us all. I just had a week where earlier symptoms of RD were denied as even being part of disease in favour of small joints as clinical diagnosis so your book made refreshing reading – why don’t they listen to patients? It touched on aspects of nomenclature that i hadn’t even considered like funding for research etc. i will defintely be lobbying some of organisations listed for name change. Only been diagnosed 3 months but fed up with explaining it is not like osteo already. I really appreciate the time and energy that must have gone into writing it whilst suffering this awful disease. I intend to recommend it on UK NRAS site too. You are a real advocate for change: thank you so much.

      • Thank you, Keren, for taking time to give feedback and help move our battle forward.
        This is definitely the best way I could have ended my day – to check in here and read your words.
        To your question – it is 2 things. Doctors are trained to think they know more than non-doctor, of course. It’s a well known problem, sometimes called “eminence based” medicine (as opposed to evidence-based). The second thing: the textbooks that they read are behind the science – usually by a few years. In RD, they are much more behind. As I wrote in the book, there have been other generations that tried and failed to change the status quo. I think this time we will succeed because it is grassroots and worldwide AND the evidence is clearer.

    2. Keren says:

      Thanks Kelly, I really hope so! My lovely daughter said the other day if she was an expert in the field she would be reading everything she could lay her hands on and especially the most up to date research as well as listening to patients. Couldn’t agree more on the eminence/evidence basis or should that be bias?! I am 3 months in and have already given up mentioning anything that isn’t joint related to them. Yes I know the NHS is underfunded and overstressed in this country but it’s 2017 and even the NRAS site here give an excellent concise definition of exactly what Rheumatoid Disease is on their literature and how different to osteo; hospitals are heavily dependent on it for patient info. so you would think they would know better! I do sometimes feel I’m banging my had against a brick wall. I am an educated adult yet frequently leave Rheumatology here feeling like a 5 year old who’s been put right or patted on the head! It is so comforting to have someone set it out so clearly and articulately. Thank you. I hope your book has a massive impact.

    3. Carrie says:

      I just wanted to thank you for your book and let you know that I’ve posted about it and the link on my blog. I hope this finds you having a low pain day.

      Kind regards,
      Carrie

    4. Doreen Burkey says:

      Dear Kelly, you have been in my heart and on my mind so much lately. I was thrilled to see your post! I tried to watch your online thing the other day (maybe yesterday?), but for whatever reason, I couldn’t connect. I am excited to read your new book (once I figure out how to get it)! Congratulations on finishing it and anyone who has RA/RD knows that it doesn’t matter how long it took.❤

    5. Ann Lee says:

      My name is Ann Lee, i was doing very great until one morning i woke up with painful joints all over couldn’t even move an inch, my mum called our family doctor for check-up and i was took to the hospital later did i found out that i was diagnosed with Rheumatoid Arthritis, i bought lots of medicine as told but nothing worked out a friend of mine told me to contact Standard Herbs Home for herbal remedy which a friend of his also contacted when he was diagnosed of Rheumatoid Arthritis and they really helped him, so i contacted Standard Herbs Home and i purchased the herbal remedy and after 4 months i went for check-up and i was cured from Rheumatoid Arthritis, God bless you Standard Herbs Home.

    6. Abbie says:

      Hello Kelly! I have been following your blogs for a few years now -they have helped me through some tough times and to become more educated. Having dealt with this disease for 22 years (more than half my life), you need to hear that you are not as crazy as you feel after visiting some of these doctors (and trust me when I say I have seen MANY doctors). I continually come away thinking “how can they not see these things that I am dealing with -why do they not LISTEN”. This website and the people who chime in keep me grounded and a positive path. I have finished reading your book and can’t think of the words to say how much I applaud you for your time, research and effort you had to have put into it -all the time battling through what we all deal with on a daily basis. I have been passing it around and talking to others about it, and intend to take it with me to my next drs appt. I don’t know if my doctor will appreciate that or not, but if we want to succeed in making the correct information known, we can’t worry about that. Thank you for all you do!!

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