Rheumatoid Awareness Day 2016

February 2, 2016 is the fourth annual Rheumatoid Awareness Day.

Rheumatoid Awareness Day 2016

Happy Rheumatoid Awareness Day 2016

The theme for Rheumatoid Awareness Day 2016 is the real rheumatoid disease, abbreviated with the hashtag #TheRealRD. Seven facts illuminate the stark differences between the media version of rheumatoid arthritis and the rheumatoid disease that’s experienced by so many. Sharing these 7 #TheRealRD facts is a positive way to combat the misinformation and minimizing that’s so typical with regard to rheumatoid disease (RD). You can click on the images to enlarge, feel free to save, and share.

Which of the 7 Facts can you comment or blog about?

As you read 7 facts, if you’re a reader of RA Warrior, you might be tempted to shrug, “Oh I know that.” But as you read #TheRealRD facts, which one might have make a difference to you if the world understood it? Which ones do people have difficulty grasping? Thinking back, was there ever a time you misunderstood some of them?

1) Rheumatoid disease is not a type of arthritis; arthritis is just one symptom.
2) Current treatments are not adequate for many people with moderate to severe rheumatoid disease.
3) Rheumatoid disease manifests itself differently in each person and even in the same person over time.
4) RD research is severely underfunded in the U.S. at about 1/12 per patient rate of similar diseases.
5) Rheumatoid disease is often an invisible illness.
6) Early aggressive disease treatment has been shown to produce the best outcomes.
7) Remission is rare. Daily pain is not.

Click an image to enlarge, Pin, save, or pass on.

Rheumatoid Disease Fact 1 Rheumatoid Disease Fact 2 Rheumatoid Disease Fact 3 Rheumatoid Disease Fact 4 Rheumatoid Disease Fact 5 Rheumatoid Disease Fact 6

Which one will you comment or blog about? Here’s mine:

I could write about all of them, and maybe I will. Number 7 strikes close to home. Everyone acts like my RD is an occasional problem. They seem to think the symptoms remit and I just have “bad days.” But that doesn’t relate to my experience at all. We’re not all the same (see Fact #3). I live every day at least 80% disabled and in pain like labor. It takes me hours to do what used to take minutes. When people hold on to a wrong perception of the disease, it affects the expectations they have. The resulting misjudgment and lack of accommodation are devastating.

Rheumatoid Awareness Day blog carnival

Any of the 7 #TheRealRD facts would be a great blog post topic in honor of Rheumatoid Awareness Day. If you have any kind of blog, you can write a post this week using one of #TheRealRD facts. Email me the link and I’ll post it as part of a blog carnival here on RA Warrior, inviting people to visit your blog and helping spread your message.Rheumatoid Disease Fact 7

Live Chat with Mayo Clinic rheumatologist John Davis for Rheumatoid Awareness Day

You are invited to join us at 8:30 pm EST February 2 – that’s TODAY – for a Facebook chat in honor of Rheumatoid Awareness Day.

It’s easy & you don’t need to say anything to be there and enjoy the chat. Just click HERE and refresh the page every few minutes so you can see all the comments.

Get a Rheumatoid Disease ribbon for social media profiles

To add an RD ribbon to your Facebook or Twitter profile, visit the Twibbon site here.

Rheumatoid Awareness Day ripple effect

We have made progress. However there is still mostly nonsense or mixed messages in the media and on medical websites. In Pennsylvania, February 2 was designated as “Rheumatoid Arthritis Awareness Day.” It’s a thorny discussion, but the whole purpose of establishing the day is acknowledging RD as a disease instead of a form of arthritis. That’s the first step to progress on awareness, improving the paltry research funding, or finding a cure.

It’s fantastic how quickly Rheumatoid Awareness Day has taken hold. I’m thrilled to see February 2 listed on many websites, including Wikipedia, as the one day to acknowledge rheumatoid disease. Many websites now say “rheumatoid disease” instead of “arthritis” because they know that minimizing RD is offensive to patients (who they want to click and read their stuff). Meanwhile Glenn Frey’s cause of death put the seriousness of RD on the radar. During that time, half a million people viewed our Facebook Page. Most wanted the world to understand seriousness of RD.

Learn more about the history and purpose of Rheumatoid Awareness Day on RAW, or visit this page at the Rheumatoid Patient Foundation site.

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

9 thoughts on “Rheumatoid Awareness Day 2016

  • February 2, 2016 at 3:19 pm
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    Number 1 and 7 resonate the most with me. Newly diagnosed this past month, my husband and I are going to my first follow up appt this Friday. Both number 1 and 7, we are discovering, learning, accepting, and incorporating into our lives. Number 1 is what I’m starting to share with others, while I keep Number 7 in mind for their follow up questions and suggestions. Numbers 1 and 7 are the bookends to most conversations about rheumatoid that we will have.

    Reply
  • February 2, 2016 at 3:50 pm
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    I got my pin yesterday, thank you! I am wearing it proudly today.

    Reply
    • February 2, 2016 at 5:04 pm
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      thanks Stacy. This is our first awareness item on Amazon & it’s brand new. When you have time, can you please post a review there saying the same?

      Reply
  • February 2, 2016 at 8:11 pm
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    5# Even family has a hard time with this. I think we make it harder on ourselfs because most try and keep a good attitude. Not acting like we really feel. Kelly praying for you.

    Reply
  • February 3, 2016 at 11:13 am
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    Two years into my diagnosis, I would say 1, 3 & 6 resonate the most with me. I’m still learning about RD & it is difficult when it is so different for each person. The medicines used to treat the disease are scary, I haven’t yet found a doctor I’m really confident in and I understand how difficult it is from their perspective when there are so many variables to deal with for each patient. I can only hope that I’m going in the right direction with my treatment because the long-term outlook with RD is enough to make me really worry about my future & my family’s future.

    Reply
  • February 3, 2016 at 12:13 pm
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    Number 1! My joints appear totally normal and have not suffered damage (for this I consider myself very fortunate). Yet, most doctors evaluate my disease mainly by looking at my joints. This feels to me as though my ongoing pain and fatigue, lung and cardiovascular nodules or scar tissue (they’re not really sure), and many other systemic symptoms don’t matter or count, and I should somehow be functioning like a person who is completely well. I am definitely more able than I would be if the joints were constantly flaring. But for my particular version of RD, as I always say to doctors and friends, my joints are the least of my troubles. I struggle to keep up with normal everyday demands as a parent, even while off work for years, and need lots of extra rest. Managing my health feels like a full-time job of it’s own much of the time. I’m fortunate in the grand scheme of life with RD but would love to see widespread understanding of all of its evil effects aside from joint swelling, joint pain and joint damage. Thanks for all you do for all of us! (My ‘blog’ has never gotten off the ground. I’ve never had the extra time and energy you make it happen. I don’t know how you do it! Someday… ?)

    Reply
  • February 3, 2016 at 2:29 pm
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    PEOPLE SHOULD REALIZE THAT RHEMATOID ARTHRITIS CAN KILL A PERSON REALY FAST IF THEY ARE NOT EDUCATED ON THE FACTS OF THIS DEADLY DISEASE.
    OSTEOARTHRITIS WILL CRIPPLE YOU AS IT EATS AWAY AT THE CARTLIDGE THEREFORE REQUIRING JOINT REPLACEMENT.
    I AM THE WORST CASE HISTORY RECORDED IN THE MEDICAL FIELD WITH RHEMATOID ARTHRITIS.
    LOOK AT MY WEBSITE AND READ MY BIO
    JOHN MAJOR https://youtu.be/ry4_UaK-HmE
    http://myevent.com/savejohnslegandbody.

    Reply
  • February 3, 2016 at 2:44 pm
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    KELLY
    I HAVE STAYED QUITE ABOUT RHEMATOID ARTHRITIS FOR YEARS BUT NOW I AM GOING TO TRY AND EDUCATE PEOPLE ABOUT THIS DEADLY DISEASE.
    IT HAS PUT ME ON MY DEATH BED 4 TIMES AS I HAVE BEEN THROUGH OVER 50 DIFFERENT SURGERIES.
    I HAVE BEEN ASKED TO WRITE A BOOK O MY PAST EXPERIENCE BUT I AM NOT VERY CAPABLE OF DOING IT.
    I WOULD RATHER WATCH SOMEONE LIKE YOU DOING THE GOOD WORK KEEP IT UP.
    JOHN MAJOR

    Reply

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    Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.

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