Twitter & a #rheum for the Rheumatoid Online Community

You are the best part!

rheum hashtagThe best thing about this blog is the readers. I know – I if I didn’t write a blog, then there wouldn’t be one. But the readers help make this blog a community, especially through the comments pages. We also have a thriving RA Warrior Facebook community where people are making connections and building friendships and spreading awareness. A local UK group was recently formed out of our Facebook group, as well. Several readers are starting local support systems through Arthritis Introspective. (See our Local Support page, if you are interested.

Connecting #rheum and social media

Another community that many of our readers use is Twitter. Twitter is kind of like an ocean with lots of schools of fish in it. There are several patient communities on Twitter, the largest being the Diabetes online community or “DOC.” It seems like the Diabetes community is a few years ahead of the Rheumatology community in linking together online.

I’ve met a few fish from their schools and I’m learning from them. They do a great job connecting and getting good information out! I’ve met some very nice folks.

Here’s a certain experience I’ve had over and over the past year: someone on Twitter taps me on the shoulder and says, “Psst. I have RA.” Sometimes they need to keep their diagnosis private. Other times, they would love the chance to connect with the others who have RA or AS or PsA or Sjogren’s… There is a way that we can make that easy!

Announcing the hashtag #rheum

We can use the hashtag “#rheum.” Then, anyone who wants to find others talking about #rheum issues can find them easily. Anyone who wants to follow or connect with others can do so. Meanwhile, others can still tune in who are only ready to read for a while before speaking up.

What will the #rheum community online do next? Maybe we can be as successful as the #DOC. What could we call it? Lots of tags are used already. #ROC is taken. But #Rheum is available.

We could even do a regular Twitter chat like many of the #hashtags do. During one hour a week, we all use the same #hashtag like #rheum or #RheumTalk. It works like a filter and then you can easily find a thread of just the folks who are using the #rheum tag. It’s really fun.

Well, that’s my simple RA Awareness and community building idea for today. If any of you are on Twitter, please Tweet back to me #rheum so we can try it out. If you’d like to try Twitter, it’s easy. Just go to Twitter.com and pick a user name. “Follow” me “@rawarrior” at this link. And I can introduce you into some awesome folks.

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/

10 thoughts on “Twitter & a #rheum for the Rheumatoid Online Community

  • October 12, 2010 at 7:07 am
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    Kelly – just a word of warning. The Georgia Congress Center is about 10 ACRES of space. It is HUGE! Please make arrangements for a motorized scooter to use there during the ACR meeting. This will be a life-saver for you. I know. I live in the Atlanta area, and I attend meetings at the GCC about every 2 or 4 years for the International Woodworking Conference. Each time we went I would just “fade out” and my joints would be so sore, swollen and stiff after about 1/2 day. Last time, we rented motorized scooters. WOW! I got to go to every meeting and every exhibit I wanted to see! What a difference!

    So, after reading about you fading out and being in horrible pain just going to the grocery, I strongly encourage you to “bite the bullet” and rent a scooter. I can’t come up with the entire cost for the entire time, but I’m sending in a Paypal contribution earmarked for that scooter.

    Cheerio!
    Elizabeth

    Reply
    • October 14, 2010 at 11:31 am
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      Elizabeth, I’m thinking about it, but my shoulders & wrists are the reason I don’t use scooters at stores. I can’t hold my arms out like that. I did use wheelchairs in airports this week so I’m wondering if I can rent a wheelchair for “as needed” use. This is a big issue for me since I want to speak face to face w/ docs. But I guess they also need to see the reality of RA. I can only “fake it” for a short time & I do go down, whereever I am. I think ACR is only using 2 sections of GCC also my daughter is coming for assistance. It does all make me nervous. Like I said – a big deal.

      Reply
  • October 12, 2010 at 8:06 am
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    I just joined Twitter to be on the cutting edge of RA awareness.

    Reply
    • October 14, 2010 at 11:17 am
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      Yay! I was thrilled to see you there! More the merrier – & world domination is next right? LOL. Well, at least we can have a little school of fish going strong.

      Reply
  • October 12, 2010 at 9:09 am
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    I have the hardest time navigating these sites sometimes. I’m a send me a link kinda gal. Could you possibly put up links to the chat areas or message boards? Otherswise, others will have to lead me by finding me. Doesn’t sound like brain fog now does it. Hugs to all. Tammy

    Reply
    • October 14, 2010 at 11:15 am
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      Tammy, you did great finding the comments pages here on the blog so I know you can do it. (There’s a link to the comments page at the bottom of every post.) Here in this post, there are links to the Facebook & the Twitter pages in the post – they are blue colored & underlined. Just click on them and a window will open & you’ll be there. You might have to fill out a short page to join if you haven’t been there before. I or others will be glad to show you around there. On Twitter, if you follow me then I can find you back. Here’s my Twitter link again: http://www.twitter.com/rawarrior . Let me know if you can’t get there.

      Reply
  • October 12, 2010 at 9:33 pm
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    I need twitter 101 class….lol

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    • October 13, 2010 at 10:32 pm
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      It is easier than you think. But if anyone joins & just asks for help there, I’ll be glad to explain things & introduce you around. Folks there are so helpful. At least the ones I follow are. 😀

      Reply
    • October 15, 2010 at 12:01 pm
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      Thanks, Dr. We will all find more friendly faces. Patients are telling me good things about you being a warrior for our side! We are on the same side. :rainbow:

      Reply

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