Rheumatoid Arthritis Blog Birthday | Rheumatoid Arthritis Warrior

Rheumatoid Arthritis Blog Birthday

Birth of a rheumatoid arthritis blog

This month the RA Warrior website—and blog—began its 12th year. In 2008, I dreamed of building a rheumatoid arthritis blog and website to bring better answers to people with RA that I’d already begun to know and love—and many thousands I was yet to meet. On May 17, 2009, I sat on a lawn chair next to 4-year old Roo on his swing and just started the blog. There were months of notes and lists and research… but I just typed a short blog post from my heart about how it felt sitting there with RA—unable to swing or build the rheumatoid arthritis blog that I dreamed of. (Here’s a link to that first RA blog post.)

Mission of the rheumatoid arthritis blog

The mission from day one: information and encouragement to fight RA! The RA Warrior website and blog focus on fighting back against rheumatoid disease and staying positive, but to do that we need to have the facts! Back then, medical websites almost never acknowledged extra-articular aspects of the disease or that treatments didn’t work well for a large percent of patients. What I learned from patients—whom I always believed—wasn’t reflected in most medical articles. And what I learned from medical journals hadn’t been collected and put together so that people—especially patients and doctors—could see the whole picture.

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Achievements of a rheumatoid arthritis blog—and team

Rheumatoid Arthritis Blog BirthdayThat first year was full of long nights building new things on RAW or fixing the website after it crashed; most of which was done together with my daughter KB! There were the first few hundred fans on Facebook whose love only increased my courage. The front page of AOL! John who helped us connect with the ACR. After that, friends stood with me to found the Rheumatoid Patient Foundation (RPF) to advance the cause: improving the lives of people with rheumatoid disease. Dana Symons—the talented woman who served as VP at RPF for countless hours alongside of me (and even when I could not).

Challenges for a rheumatoid arthritis blog

Accomplishments only come because you meet challenges. One of the toughest challenges for people with rheumatoid disease is rampant misinformation about the disease. We’ve seen clear improvement in response to our advocacy. Many websites that claimed RA /RD is merely a “type of arthritis” have gradually updated their content to include some acknowledgement of extra-articular symptoms. But we must press on. Just last week I was looking at articles about ulnar deviation (since mine is getting more severe) and I was dismayed to see how a well-respected medical website treated lupus so differently from RA / RD. This article is an example of how poorly RA is handled. From Causes to Treatments to inaccurate images—I could do much better on my humble RA blog (and I probably will).

We’ve also contributed to progress in the roles of patient advocates. Advocates are more likely to be actually hired to help with a project and less likely to receive Dear Blogger letters asking us to do someone else’s job for them for free or just have our content stolen outright—but it still happens.

Now, in its 12th year, the RA Warrior Website still kicking butt and taking names (WWII idiom). Click To Tweet

7 Things you may be surprised to know about this RA blog & website

  1. I met almost all of my best friends thru RAW—how about you?
  2. I did not support working to change the name of RA (read why!)
  3. My book, RA Unmasked was written after I read thousands of medical journal articles.
  4. To answer questions people ask me, I use the RAW search box daily!
  5. While they were kids, all five of mine were only known on RAW by their nicknames e.g.: Roo, Tiger, Bear
  6. The incredible dropdown Tags List is still the fastest way to read what you need on RAW.
  7. In 7th grade, my science teacher gave me a C on a paper because he didn’t believe I could’ve written it. Some silly people think the same thing about RAW.

Happy Rheumatoid Arthritis Blog Birthday! KB calls it RA Warrior Day.

In some ways, this blogaversary feels more significant than my real birthday.

WHAT ABOUT YOU? HOW HAVE RA BLOGS—OR THIS ONE—MADE A DIFFERENCE?

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/

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8 thoughts on “Rheumatoid Arthritis Blog Birthday

  • May 30, 2020 at 9:51 am
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    Love you Kelly 😊 when I was first diagnosed about 10yrs ago yours was the first website & ray of hope I found. Like you my RA has been difficult to treat & I constantly deal with this crappy disease. Congratulations & thank you so much from the bottom of my heart 💞

    Reply
  • May 30, 2020 at 10:15 am
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    I can’t believe it has been 11 years! Happy that I could be involved in you make such a difference for so many people. Love you!

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  • May 30, 2020 at 12:11 pm
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    Happy RA Warrior Day, Kelly! For me it’s been 11 years, and your website was where I could find real information about what was happening to me. You helped me learn to be an advocate for myself, stand up for myself when I had not so helpful doctors not listening or not helping, even stand up for myself in truly horrifying life situations. I’ve learnt that this disease is not who I am, and I’ve learnt to live anyway and follow my dreams. I’m doing things now I would never attempted before I was diagnosed. Love you, Kelly! 🌻

    Reply
  • May 30, 2020 at 4:13 pm
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    Happy RA Warrior Day!
    You have always been an inspiration. Your blog has helped me internalize the fact that I am not alone in this journey. I truly appreciate what you do. Thank you.

    Say hello to KB for me…

    Reply
  • May 30, 2020 at 4:43 pm
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    I just can’t thank you enough for all the REAL info about RA! The internet and some doctors would have you believe you’re crazy than to address many issues as caused by RA. The entire medical community needs to read your blog so they can be REAL. Hard to fathom they know so little after so many years in school, even rheumatologists!

    Reply
  • May 31, 2020 at 9:57 pm
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    Huge huge congratulations. I truly don’t know if I’ve ever seen a more professional patient blog. Your technology is just so way way more sophisticated than anything I know how to do, that’s for sure.

    I’m so tickled to be able to say I knew you when, even before the blog. And BOY have you made a career out of “pay it forward.”

    Hoping to see you in person again when things get more normalized!

    Reply
  • June 2, 2020 at 11:05 pm
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    I wanted you to know how important your website has been to me. I was diagnosed in 2015 and got most of my information about the disease from you. Thank you

    Reply
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