This is our 10K

Bear running cross countryHave you read the posts on the Facebook event for Rheumatoid Awareness Day February 2nd? The stories, like thousands of comments on this site, describe the range of experiences and emotions people face with this disease. I’ve said your comments are like another whole blog– and that’s true. Together, we tell the full story of this disease.

James says what many of us know: “It’s such a struggle on a daily basis for those of us with this disease, and to have those around us say… ‘I know how you feel, I’ve got a little arthritis pain in my finger or toe or where ever.’ This is so much more than just arthritis.”

Nothing can paint a picture of the reality of the disease like people who live with it 24/7/365 without time off for good behavior.

Kristyna: “I was wrongly diagnosed for years… I was finally diagnosed when I could no longer hold my coffee cup in the morning when I woke up. I have been very lucky with an amazing rheumatologist who with medication has made my life so much better. I work as a paramedic and for many years I hid my disease but now I am no longer shy about it… No matter how well I am I still have bad days and live with the disease every day. I just don’t believe in letting my disease rule my life instead I try and rule my disease.”

Christi: “I can no longer work as a medical assistant due to RA and degenerative bone disease. I’m in a wheelchair now. I wasn’t diagnosed for 3 years (have had it for 17 years now) and during that time a lot of damage was done to my bones. It’s so important to treat this monster early on. Find a good Rheumatoid Arthritis doctor and don’t give up!”

THIS IS OUR 10K

In the first 2 days, 2,000 people signed up for the Facebook event, as part of the Rheumatoid Awareness Day observance. Tonight there are about 5.5K It’s possible that by February 2nd it could be 10K! Hey! Do you know how many times I’ve been asked, “When are we gonna have our 10K or something – anything – just for RA?” This is our 5K or 10K and we don’t have to walk if we can’t.

A dollar per joint

Our own Rheumatoid Patient Foundation (RPF) exists to be certain that the voices of Rheumatoid patients – our own voices – are heard. The maker of the Vectra DA test, Crescendo Bioscience, has given the patient community a tremendous opportunity of a matching donation challenge. Since they will match each dollar that the community gives, every gift is twice as powerful. In the past couple days, donations ranged from $2 to $250!

I hope as many people as possible will give $6 on February 2 to represent the six weeks of winter the groundhog predicts – reminding us of the urgency of early diagnosis and the window of opportunity.

Or we might even donate $1 for each joint or body system we have that’s affected. Or maybe $1 for each year we’ve lived with it.

More ways to celebrate February 2

White HouseNo, we don’t celebrate this disease. But we can celebrate awareness – that we are not alone or without a voice. Some are wearing indigo and gold or buying pins or stickers, writing blogs, posting messages and images on social media, or passing out brochures with cupcakes. Several have written letters to media or public officials to ensure that February 2nd is acknowledged henceforth as Rheumatoid Awareness Day. I’ve communicated a few times with someone inside the White House about a proclamation on behalf of the day. It may happen before February 2, but if it doesn’t due to staff turnover with the new term, we’ll have it soon afterwards sealing future years.

The link to donate to the RPF: http://bit.ly/give2RPF

Handy links

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/

4 thoughts on “This is our 10K

  • January 30, 2013 at 11:52 am
    Permalink

    Kelly’s so right to describe launching 2/2 as being like a 10K race! But to win this time, we as fellow RA warriors need to donate to RPF, so that the total $$ raised (with Crescendo Bioscience’s gift) = $10K. I sent in my gift yesterday–will everyone please do the same today?

    Reply
    • January 30, 2013 at 1:02 pm
      Permalink

      Thanks for speaking out, Lorraine. I got a report that there were several who responded already and yes – it’s a 10K – a long race.

      Reply
  • January 31, 2013 at 3:20 pm
    Permalink

    I just donated this morning after reading this post. Thanks for the push!

    Reply
  • Pingback: Groundhog and Rheumatoid Arthritis Awareness Day « marilynknits

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