Where Do You Find Rheumatoid Arthritis Information? | Rheumatoid Arthritis Warrior

Where Do You Find Rheumatoid Arthritis Information?

Video: “Rheumatoid Arthritis Support and Information”

Accurate and up to date Rheumatoid Arthritis information that is easy to understand is an essential part of living with Rheumatoid Arthritis. I’ve often said that it seems like this disease should come with a degree. We have to learn so much information for Rheumatoid Arthritis management that we should get to have the initials RA after our names. Like this: Kelly Young, R.A.  😎

Of course, I’m joking about the degree.

A Rheumatoid Arthritis information class?

However, consider another disease which is complicated enough to require some education: diabetes. Newly diagnosed diabetes patients often attend classes offered by their hospital or medical group. They learn about management of the disease, what to expect in the future, and how to manage medications.

I’ve never seen anything like that for Rheumatoid Arthritis. Where did you find support and information for RA? Online only? Did your doctor recommend anything to help you find your way when you were diagnosed?

Would you have attended a class like that if your doctor recommended it when you were diagnosed? How could it have helped you? What would have been most helpful to know?

Recommended reading:

 

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

17 thoughts on “Where Do You Find Rheumatoid Arthritis Information?

  • December 14, 2009 at 10:13 am
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    Yes I would attend if there were RA classes in my area. I know only a small fraction of what there is to know about RA, any knowledge that I could pick up would be valuable.
    My dad is a diabetic and has been attending classes for years. They have been very helpful to him and he has taken better care of himself since he has been attending them (some 20 + years now). The class, or group, also has dinners two or three times a year for the entire family to be involved in. They often bring in doctors to speak and sometimes have pharmaceutical reps that will hand out free items ranging from meters, syringes and needles, even insulin.

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    • December 14, 2009 at 4:39 pm
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      Haha. I meant for newly diagnosed. You could probably teach them. haha.
      Sounds like your dad is really lucky to have a good one. I’ll bet rheums could copy what they are doing that works so well! Love the freebies too. :evilgrin:

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    • December 15, 2009 at 6:57 am
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      If you need extra advice or people to interact with about your RA or just want to gain other’s opinions, can I please suggest that you become a part of the group of people from around the world that really can stress importance to your ever earning knowledge about this disease RA and what you can do to have better communication skills with your MD and RA rheumatologist at the never ending group support at

      Reply
  • December 14, 2009 at 4:41 pm
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    Great idea!!!! They have a class for the newly diagnosed people with diabetes, why not RA/Fibro and all other chronic illnesses?

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  • December 14, 2009 at 4:42 pm
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    I’ve often thought about this and have discussed with other patients and my doctor. I have the background for this and have wanted to do it but it’s hard to generate enough local interest. It’s needed no matter what age you’re diagnosed or what stage you’re at in life.

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  • December 14, 2009 at 7:35 pm
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    I think it is a wonderful idea. I know when i was first diagnosed, a class would have been awesome!

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  • December 14, 2009 at 7:36 pm
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    I would love it, being a person that was diagnosed within the last year!

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  • December 14, 2009 at 7:37 pm
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    really fantastic stuff

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  • December 14, 2009 at 8:05 pm
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    When I was first diagnosed with RA there was no Internet. My doctor (an internal medicine doc) gave me the basic explanation, telling me it was an autoimmune disease and what that meant, that it was incurable and that some drugs could help relieve symptoms. I was living overseas at the time. While the library on the U.S. Army post where I worked was surprisingly good, it had no books on rheumatoid arthritis. The librarian, a friend, got the address for the American Arthritis Foundation, and I wrote them for information. They sent me a pamphlet. It gave me a little bit more info, but not much.

    Now there’s so much information about RA on the Internet it’s amazing. I’ve learned an incredible amount. My present rheumatologist has offered some information, but for the most part I’ve already known it because of my online reading.

    Nevertheless, I would absolutely love to attend local classes or even support groups for people with RA. Discovering bloggers who have the disease and talk about it has been so enlightening and so encouraging — I no longer feel so terribly alone. I’m considering getting in touch with the county health nurse and offering to teach an AF class or lead a support group. I know there must be many people in the area who also have this disease and feel as alone as I do.

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  • December 14, 2009 at 8:10 pm
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    Also: Absolutely I’d have attended a class if my doctor had recommended it. It would have been nice to get to know and talk to others with the disease, but as important would have been knowledge about exercise and flexibility, and about the other effects of RA, such as fatigue and brain fog. I’d have been glad to learn any or all of it.

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  • December 15, 2009 at 2:57 am
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    I live in a large suburb of Los Angeles, and I have always found it amazing and sad that there are no support/educational groups anywhere in the LA basin, let alone locally. I sure would go, and participate happily, for the information as well as the support and community of being with other RA-ers. Nothing like it around here though. Guess everyone feels they have to buy into the “perfect, blond, sun-tanned, athletic SoCal beach baby” illusion….

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  • December 15, 2009 at 11:07 pm
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    I wish there was a class! There is the arthritis association support groups and exercise that can be found on the arthritis associations website. These generally have geriatric patients only. Being 26 years old, obviously my concerns are different then theirs as we are at very different points in our lives. I wish there was a resource like an educational class or even support groups. Sometimes I think about seeing a counselor even but my insurance barely covers that type. It’s just so hard some days when you realize I am whatever years old and I cannot do x, y and z. It is hard to mourn the loss of your prior life, I still miss it dearly. It’s like the death of a loved one but that loved one is your life. Don’t get me wrong, I still have a life but it is not the life I planned for, imagined or had long talks about when I was younger. My dreams and even reality has been altered.

    I only get medical information from spondylitis association, arthritis association, medscape, mayoclinic and rxlist as these are reputable sites. Places like wikipedia may be useful for definitions and such but not scientific fact. Be weary of sites that you stumble across claiming they have information that your doctor will never tell you or herbal treatments or diets that will CURE you. If those were the case we wouldn’t be fighting with the “big guns” of Enbrel and such, we would take our herbs or stick our diet, be cured and spread the word. Oh and by spreading the word, we would be rich of a cure for RA! SO BE SMART info must come from reputable resources, ones that you could cite in a medical journal. RA Warrior is also an amazing site for information but a blog like this is a once in a lifetime, I have yet to run across others that have such precise information that is backed up and cited by reputable sources.

    Happy Hunting to all of you warriors out there fighting the good fight.

    Stay well.

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  • January 4, 2010 at 9:35 pm
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    i was recently diagnosed at sixteen and the most information i’ve gotten was googling every new medication which just scared the heck out of me 😛
    I’ve only begun with an NSAID and two weeks ago MX :p just learning the lingo is exhausting!
    i was sent to a dietitian by my GP when i brought up my concerns (i was also rapidly losing weight) :P, and she GOOGLED!
    happy to say that I think there’s been progress, but this website has had the most helpful advice and stories to consider 🙂
    both a great thing and disappointing there isn’t more public information 😛 it’s too broad because there’s such a variation,

    thank you dearly for your posts,
    I’ve just discovered this site and I’ve laughed, I’ve cried, but most of all I feel like I understand things better 🙂 thank you for that

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    • January 4, 2010 at 9:44 pm
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      Welcome, Mel. I had to smile: One thing I love about my GP is that he uses the internet right there on the spot. He will look up info on drugs or vitamins or lab results on the spot & show me. Great! I love that he is not arrogant or thinks that he has to act like he already knows it all. I trust him so much more because of that.

      I laugh & cry with the comments, too. Best of luck with new treatments.

      Reply
  • November 17, 2010 at 1:46 pm
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    After reading all the comments, I think I must be one of the lucky ones. I am from Ontario Canada and about ten years ago, my local hospital was running classes; they are still available. They are once a week for four weeks. I received a lot of interesting facts and ideas on how I can adjust my life by helping myself with diet, exercise and ways to help with the arthritis pain. I also have Osteoarthritis and at times I cannot move or think clear. By repeating physio exercise, and forcing myself to walk when I can and listen to my body, so when it needs to be rested I do, this helps me keep the joints from swelling too much.

    I was told when I was in my 30’s that I would be in a wheelchair within five years. I am now 67 retired and still try to walk a little each day, no wheelchair. Those classes helped me so much and with the help of medications and doctors. If you can get to someone to run these classes, they are well worth it.

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  • March 16, 2013 at 10:14 am
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    Newly diagnosed with Rheumatoid Diseases in February. Gave myself my first injection of MTX last night, all went well. I found this website right after I was diagnosed, what a blessing!! All I do when I go to the rheumatologist is spread the news about RAWARRIOR.COM. So very informative!

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  • March 23, 2015 at 2:44 am
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    Congratulations on your blog Kelly, it’s really refreshing and informative. I’ve only been recommended to it recently – a friend forwarded me the link. She is newly diagnosed and desperate for info; I have lived with RA for 34 years (ha! Have your degree!) and feel a strong resistance to these sites, but yours feels empowering so thank you.
    I live in the UK. Here we have the Narional Rheumatoid Arthritis Society (NRAS) founded by Ailsa Bosworth, an amazing woman who has devoted her life with RA to making the lives of other sufferers more bearable. It’s a big charity now. They run disease management classes, publish loads of info and a newsletter, apply pressure on government in the UK and Europe and run support groups all over the UK. So we are very fortunate. However when I was diagnosed there was no NRAS, no information (no internet) and too many ignorant doctors (I don’t mean that pejoratively) telling me NOTHING about what to expect etc. A blog like yours, and classes, would have been an incredibly helpful resource.

    Reply

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