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10 Responses to “Rheumatoid Disease Awareness Expands”

    1. Joanne says:

      Hi Kelly,
      I was diagnosed almost 6 years ago and it never ceases to amaze me how little is known about this disease. The general public is pretty dismissive of its impact on one’s life style and I’ve often been given that “just shut up” look because no one wants to hear about it. Other diseases are recognized for entire weeks or months but we struggle to have recognition for a single day!

      • I have lived with the same reactions for 12 years now, Joanne. For me, most of it has been when I needed small accommodations that were refused or family members and friends trying to “teach me a lesson” to stop acting like I can’t do something, etc. Like I always say, I can’t “learn” the lesson, because I’m not making it up…
        This day is an accomplishment, but you’re right—awareness has not reached the level that we need.
        For some of us, the impact on “life style” is immediate. But what I’ve tried to make known is that it’s more than that—this is a life-shortening disease through several means.
        We must remember that increased awareness will bring increased research funds—which will one day bring better treatments and a cure.

    2. Dear Kelly,

      Congratulations on this huge step you’ve helped get born for RD awareness day!! I think it’s amazing that there are so many billboards all around the country!!

      For rheumatoid arthritis day I’ve created a step by step guide to making a one page medical summary that empowers those of us in the patient’s seat and that will help our doctors listen.

      It’s designed for anyone with a chronic illness to save time so you don’t have to rewrite the same notes for every new visit and so we have a cheat sheet to help us remember the little details, lab and other test results and more.

      I was once a former family doctor and developed a debilitating chronic illness (mine is chronic fatigue), so this is something I created for myself and decided it would be helpful to share.

      I hope it’s helpful.

      Here’s the post.

    3. Kim aglietti says:

      Today is rheumatoid arthritis awareness day. Had surgery this morning to remove a bone fragment from my knee. Today I remember my favorite Aunt who suffered from this crappy disease for decades with very few options for treatment. She had gold shots at one point. Anybody remember gold shots?

      There has been much progress since then, so many new drugs, and yet here I sit, knee propped up on a pillow. Surgeon said I have severe synovial inflammation and fluid in my knee replacement, despite all those amazing new medications. He said, something about my treatment needs to change. I laughed. Changed how? To what?

      Sulfa allergy and asthma have eliminated most of the DMARDs as options for me. Two bouts of two different types of cancer means I’m not allowed most of the biologics for five more years. Rheumatologist says the rituxan and minocycline I’m on are pretty much it.

      So, I’m thinking, awareness is a start but not nearly enough. But I’m still celebrating. So far, my post-surgical pain is less than my pre-surgical pain. Yay? Bye bye bone fragment!

      • Thanks for reading as you recover, Kim. I pray your knee continues to feel better.
        You bring up such a good point. Perhaps a majority of us have nothing that significantly helps after cycling through all the meds and eliminating those that harm us too much. I’ve never had a dmard do anything for me (aside from serious side effects). But I know others who have.
        But the convo you share is key. Docs often don’t realize that is our situation. I’ve had that same convo several times, including this week with my knee doc. Sometimes it’s the drug commercials that convince docs that there’s good medicines available for all now.
        Also, as I mentioned to Joanne, awareness is a key means to the ultimate end of better meds and a cure. Awareness of other diseases has led to increased spending that brings meteoric advances in knowledge of the disease mechanisms. We need more of this basic knowledge in RD.
        Best wishes.

    4. Tony Kitchell says:

      I couldn’t believe it in my small town of Monroe With there is a billboard announcing rd awareness day.

      On another note Kelly please use your influence to petition Medicare to stop these stupid opiod restrictions their talking about implementing.

    5. CathyE says:

      Hi Kelly
      I am so happy to hear about the billboards. Even some Rheumatologists aren’t really aware of what this disease is like for those of us who suffer with it daily. I Was diagnosed just three months ago and I cannot seem to get my Rheumatologist to look at anything but my hands! The frustration is sometimes maddening. Thanks for all you do to put RD out there instead of allowing this disease to lurk in the shadow of ignorance. I don’t know you personally but I am nonetheless proud of your efforts.

    6. Kelly!!!! I have been driving past the billboard in Providence on my way home from work for a little bit and had NO IDEA that you were part of it!!!! SO awesome!!! I am even prouder now and will be sure to point it out to people.

      Thanks for all you do!!! RD Roar!!!

    7. Jennifer Tucker says:

      I am so grateful for this website. And I’m grateful for Rheumatoid Awareness Day. I didn’t realize we had a day or a ribbon. As someone who has coronary artery disease, I have celebrated Go Red For Women during the month of February. As someone who suffers from RD, and it IS a suffering, I will remember from now on that our day is on February 2, and I will celebrate accordingly.

      Several months ago, I had my husband read several RD web sites. I really wanted him to understand the disease, as much as one can who doesn’t have it. I wanted him to know that there were days that I could hardly move, and that I was so tired I was cross eyed, and that I wasn’t being lazy or a hypochondriac.I don’t think he ever though that, but just in case… He read those articles and though he has always been sweet to me and treated me as he should, he has been particularly understanding since reading. My point being that awareness DOES help.
      Today, I bought my husband one of your t-shirts that says I love someone with RD, and I bought one for myself that says “I woke up like this”. I’m hoping that by wearing them, it will increase awareness just a little bit.
      Again, thank you for all you do here. I come to this website when I’m feeling low and I know I’m not alone. This disease can be a very lonely disease. Invisible and debilitating as it is.

    8. Ravi kumar says:

      It is great to see this awareness day on rheumatoid. My mom is also affected by the same.

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