Rheumatoid Disease Awareness Expands
Years ago, texts with my daughter MK prompted me to dream of billboards for rheumatoid disease awareness. Wouldn’t it be incredible to lay out the truth for people to see as they just drove by? I have a huge surprise for you if you have just a moment for rheumatoid disease awareness memory lane.
It’s #RheumDay—a day for rheumatoid disease awareness
Between 2006 and 2008, I began to grasp the staggering discrepancy between public opinions of rheumatoid arthritis and what people with rheumatoid disease (PRD) actually live with. In 2009, I built RA Warrior in an effort to inform and encourage. By telling the truth, I hoped to help bridge that huge gap. The RAW website and community broke barriers and set records. Together, we put rheumatoid disease on the map. But PRD, doctors, and friends in industry urged me to do more. A reader named Jay Wood convinced me to attend the ACR meeting in 2010. What I experienced that week changed me forever. You can watch my response in a short video from Atlanta—but finish today’s exciting news first!
When I got home, I worked with friends to found the Rheumatoid Patient Foundation (RPF) in early 2011. That year, RPF printed several publications and presented an exhibit at the ACR meeting. RPF continued to expand partnerships with PRD, doctors, and industry. In 2013, RPF initiated the first Rheumatoid Awareness Day on February 2nd. RPF also authored academic publications, as well as presented research posters and a well-attended session at the ACR meeting.
A need for BIGGER rheumatoid disease awareness
Members of RPF and people who wrote to me were excited and appreciative. But there was also a strong sense that rheumatoid disease awareness needed to go bigger. It needed to reach the people who’ve never even heard of RPF or RAW.
Have you felt that too?
I never forgot about the billboard idea. I brought it up at RPF meetings sometimes. We’d done some big things. But we needed to do something really big. Big like billboards. Somehow, someday…
RPF pressed on—often despite my being unable to help. We met many more milestones. We began a Petition for a National Proclamation for Rheumatoid Awareness Day. Many of you played a part in increasing awareness year by year.
Rheumatoid disease awareness expands—to billboard width!
Over the past year RPF presented the first ever billboards for rheumatoid disease awareness. This was in large part thanks to Lamar Advertising Company and a very special PRD who connected RPF to Lamar, Barbara.
As this year’s Rheumatoid Awareness Day dawns and the groundhog (a special connection to RD) finds his shadow, tens of thousands of people are driving past hundreds of rheumatoid disease awareness billboards.
That’s right—HUNDREDS. Over 200 billboards in 30 states! Click to see the most updated list of Rheumatoid Disease Awareness billboards. Here’s some media coverage leading up to #RheumDay.
Here’s how one orthopedist participated. After Dr. Valentin Antoci learned of the billboards and Rheumatoid Awareness Day, he appeared in this video below to encourage others to get involved. Let me know if you have a great doctor who might be interviewed. I’ve already asked mine and he said yes.Hundreds of billboards across USA finally bring RD / RA awareness to the masses! #RheumDay Click To Tweet
WHAT CAN YOU DO FOR RHEUMATOID DISEASE AWARENESS?
- Use #RheumDay on social media posts showing how you celebrate #RheumDay for a chance to WIN an item of your choice from RPF’s swag store.*
- Post a picture of a billboard near you!
- Sign the Petition for a National Proclamation for Rheumatoid Awareness Day Easy peasy. Then forward it to friends.
- Send a message asking Vice President Mike Pence, who has a personal connection to RPF, to encourage President Trump to make the Proclamation.
- Wear something for rheumatoid disease awareness like an awareness t-shirt or indigo and gold. Wear a ribbon or pin, or make your own. Or get an awareness bumper sticker.
- Make a donation to the Rheumatoid Patient Foundation, the only non-profit with the specific mission to Improve the Lives of People with Rheumatoid Disease.
- Share images and links about Rheumatoid Awareness Day on social media or in emails to friends. Don’t forget to add #RheumDay
- Read more about Rheumatoid Awareness Day – click here.
- Add a Twibbon, a virtual awareness ribbon, to your social media profile picture for February. It’s easy – click here to see how.
- Over the years, people sent photos and emails to share many fun ways they celebrated, including getting an awareness tattoo.
- Print a poster for your office or refrigerator.
- Make cupcakes – or soap!
- Have people over for pizza & woodchuck cider (a woodchuck is a groundhog) since it’s Groundhog Day!
- Have a Rheumatoid Arthritis Petition Signing Campaign in your own neighborhood, church or office.
* Click here for the #RheumDay giveaway rules.
- 5 Reasons Disease Awareness Matters
- 10 Misconceptions About Chronic Disease Many People Believe
- What If Rheumatoid Disease Were Recognized, Properly Funded & Medically Understood?
- 5 Reasons Rheumatoid Disease Is a Better Term than Rheumatoid Arthritis
- Rheumatoid Arthritis Awareness: Sugar Coat Cookies Please, Not a Disease
20 thoughts on “Rheumatoid Disease Awareness Expands”
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.
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.
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.
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.
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.
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!!!
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.
It is great to see this awareness day on rheumatoid. My mom is also affected by the same.
I am so proud of all of the efforts to educate the public about rheumatoid disease. I was, however, disheartened from what I learned today… I applied to my employer (public school system) for “sick bank” – past salary donations due to RA related illnesses. I teach kindergarten. I was told by the teacher’s union secretary that Rheumatoid Arthritis is no longer covered because it isn’t “catastrophic”. Apparently, the successful use of bioloics for many was the reason. I was speechless. Where do I go from here?!!
First, I’d like to say thank you for the info you provide on your website! It’s a big help for me, as a newly diagnosed RA patient. RA awareness is so important and where I live, people seem to know so little about this disease!
I was just diagnosed about 2 months ago & it’s been really hard. The only rheumatologist that accepts my insurance can’t get me in till the end of June! So, for now, my family doctor is treating me with steroids bcuz that seems to be the only thing that helps. Although, I’m a brittle diabetic as well, so the steroids are really making my blood sugar go pretty high, even after my insulin dosage has been increased. The thing is though, my doctor tried taking me off the steroids last week & after just a few days, my joints started to swell & flare up really bad, so he had to put me back on them.
I’m so new to all of this & honestly, until 2 months ago, I knew nothing about this disease, I had no idea how debilitating RA could be! I’m reaching out to you as someone that feels all alone & scared of what is happening to my body. I was so swollen when I was diagnosed that I was in the hospital bcuz I could barely walk & I couldn’t do much with my hands, not even simple things like my personal care, it was a nightmare! I had been like that at home for 3 weeks, then was hospitalized for a week before they found out what was going on with me.
I also wanted to mention, I read that you homeschool your children, I also homeschool my daughter, she’s in 5th grade.
Do you have any advice for me or any tips?
Thanks for taking the time out to help those of us suffering from RA!!! It’s much appreciated!!!
I’m so sorry you’re going through all of this. I hope the new rheum doc will be able to help find a treatment that works for you. It is hit or miss – so don’t give up if the first thing is not the one. Yes, steroids are the only thing that works on “everyone.” There is a cost as I well know, but it’s also impossible to stay in bed permanently when you have kids or responsibilities…
As far as homeschooling, I have only 1 student left – the rest successfully graduated. I’m very proud of their great success after homeschooling – proud of them and that we homeschooled.
Tips? I should write a whole blog post – I’ll put it on my list.
Here are a few though.
Never forget that each one’s needs are different. I believe you will be guided to give them what they need. It’s OK if you don’t continue to do the same thing every year. Change it up as needed based on what you can do. We used to travel to historical places and write about it.
I recommend including “real life” tasks as learning. At her age, teach her to mend or cook dinner for the family – give her goals and grades for Home Ec and she will be proud. We do a PE class now with other homeschoolers, but my older kids used to play on football teams or take tennis lessons and all that practice was our PE. As my RA has gotten much worse, we are incorporating a couple of online classes – most states have them for free. He took camera that way this year and learned so much. Yes I had to buy a camera, but he’s learning a skill he’ll use forever. At 9th grade and up, my older kids took classes at the community college for Dual Enrollment credit (college credit they really used) and learned things like Art, Spanish, or ASL—that I couldn’t teach.
I still do the basics like math, science and history. I choose books that have very small bites day to day—no grand scheme or planning book.
Don’t feel stuck in anyone else’s mold – even your own. I hope this helps encourage you—I’ll try to write more on this.
Hi! I just want to say that today I found your site, and I was thrilled to see you referring to RA as what it really is–rheumatoid disease. If we want people to stop comparing our disease to their grandfather’s bad knee or their own tennis elbow, the “a” word certainly has to go!! Looking forward to reading more about what you have to say about this life-changing illness.
I live in Wales, one of the countries that make up the UK. There is a growing need for the change of name here too
,in fact all over the U.K. We have our “RA” awareness in June each year and i shared one of your Facebook frames as did many others. I will be printing some of your posters out at some point to put up in my doctors surgery.I share many of your awareness pieces on my own Facebook already, as understanding of RA/RD is so low here. Keep up the incredible good work you do, you have helped me through many dark times over the last 2years. I had fast onset debilitating RA/RD begin in June 2016 and I’m still struggling to get it under control with medication.
Yet again a big thank u
Thanks for sharing Nikki. Your encouragement means a lot to me too.
I just picked up “Unmasked” and am devouring it. Your book tells the truth of my experience. It is refreshing, comforting and supportive. It also affirms my greatest fear: a systemic, chronic, and progressive disease that some doctors overlook, devalue or misdiagnose.
My paternal grandmother suffered with RD, and I was part of her life while it ravaged her body and ultimately took her life. While RD created disabilities for her physically and while she suffered through pain every day, her spirit grew stronger. I am so blessed to have had such a tangible example to appeal to as my own disease manifests.
Symptoms were present for twenty years, but as an athlete and coach I paid them no heed. Pain was merely a side effect of hard work. That is, until it was hard work to walk any distance.
Since then, treat-to-target and intense study have helped tremendously. Physical therapy, cognitive behavioral therapy, meditation and prayer have been cornerstones of disease management beyond the foundations of primary care and rheumatology. Fortunately, I have not yet had to rely on any of the more powerful pain medications that have such an effect on the mind except on rare occasions. Fatigue, depression, and pain along with varying mobility are all still present in differing degrees depending on the day of the week, the weather and certainly many other variables. That’s life, and I’m blessed to be here while my daughters grow up. A bevy of meds, including steroids and corticosteroids keep me at work as a banker and a (mostly) participating member of my family. I backed off community activity as most of the meetings start after the time I’m generally in bed (7:00 to 8:00 most nights).
I can’t overemphasize the importance and necessity of exercise in my life. Whether it is stretching, walking or (on good days) lifting weights or possibly riding a bike a mile, every successful effort is celebrated as a victory. The benefits are mental, emotional, physical and spiritual. While the disease progresses, my victories are reminders of what is possible and help my spirit expand.
What I have missed is a community of understanding that your site represents. I am very appreciative of this venue and all the work it takes. I can’t thank you enough for “Unmasked”. Knowing my disease, and knowing the insights are valid help so much in providing the best possible outcome. Thank you!!!
Please keep up the great work. Best wishes, love and prayers!
Thank you for sharing Ercel. My best to you and yours.
Kelly, not three weeks after finishing your book, I was diagnosed with cardiomyopathy. A heart catheterization this Friday will determine more.
Perhaps this is evidence of RD moving and advancing across systems. More will be revealed.
In any case, I can tell you how well Arava and Humira have worked for me. With them, I am in controlled discomfort with limited disability. Without them, I am returning rapidly to greater pain and disability. At least the trade will be the full power of my overactive immune system when I go to the hospital this Friday.
Hope all is well with you and yours.
Hi I have now been diagnosed for the 2nd time with RD. The first time I had pain in my joints but no swelling so my rhuemy decided that I don’t have RD. Now I complained that I have pain in my fingers and toes, so she did blood work again and of course I am sero positive. I again have no swelling but lots of pain. What do I do?