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Hi Kelly
Thanks again for your post. I ‘ve had a bit of a week of it and your writing always brightens up my day. It is for this reason that I’m suggesting our colour should be yellow. Not a polite lemon shade but the brilliant yellow of a field of daffodils, or buttercups.
It should not only throw light on our situation but cheer us up as we join your fight.
Thanks again
Jane
I like that Jane. And you know what is really beautiful, too? Yellow with purple or blue – in case that color sticks around, too. :rainbow:
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I always liked lime green. It not only catches the eye but I always smile when I see it. Fire Departments are changing their trucks to lime green so that people will notice them when they’re driving to an emergency. Maybe the same will work for us.
What a neat idea!
My husband was sharing his frustration with me this morning, that occurs every time he explains to coworkers why his wife is chronically ill: the name of the disease “rheumatoid arthritis”. No one understands that it isn’t “just” arthritis. He is so tired of the misunderstanding and lackadaisical attitude that he just now says “she has autoimmune disease”. I think we need to rally together for a name change to RAD! Rheumatoid Autoimmune Disease. This would more adequately reflect the disease process.
Maybe brilliant yellow would be a good color to go along with the name change, as “RAD” kind of reminds me of radiant. And radiant makes me think of the brilliant yellow of sunshine and light.
Julie, I’m kind of glad your dear husband is frustrated actually. 😉 Sorry, but I’m glad he is trying so hard on your behalf.
I say white ribbon (don’t think that has been used) with red mean looking dots to show the pain and heat we feel in our joints. Something that stands out. Wouldn’t it be great if our ribbon became as recognized as the breast cancer or even the autism one…I know I have big dreams. I also completely agree with Julie, for one my husband is the same as yours he gets so frustrated and has this really great way of explaining out now how I have an autoimmune disease, also we have used the term Rheumatoid Autoimmune Disease too it’s great to see someone else use it.
Yellow I have seen a few mentioned is a great color too, but it is The Military Ribbon and Lance Armstrongs live strong color.
Well I know i’ve said this a thousand times..but I’m going to say it again..lol.. we the ones living with R.A have a really bad habit of down playing this disease…we minamize our pain, we dont speak up to our drs, we make excuses..why we cant do something, when asked how we feel we say “fine” we need to be 100% truthful about this horrible disease..if WE cant be truthful about it then why should we expect anyone else to understand what we go through? If we want to raise awareness..shouldnt we the people with R.A be on the for front of being totaly honest about the disease first? I just want change in how we see our own disease…then we can really have awareness? It all starts with us!
thanks
Kim
Kim, that is a really good point. Please have a look at the discussion with Erin on the previous post. I would be interested in your views on the links I just gave her, too.
Kelly just wanted you to know…this is the first place i found that helped me almost 2 years ago…thank you for all that you do!!! this has been a life saver!
Kim
I vote for yellow. I saw an autism awareness puzzle piece and I thought that would be a good start for an RA logo. Like autism, RA is a bit of a puzzle from the diagnosis to how it affects you from day to day, etc. How about a yellow puzzle piece with jagged red bubbles where the hands, knees, feet, elbows would be to indicate pain and inflammation of the joints? That would be cool.
I just don’t see the medical community wanting to change the name of the disease. They love their Latin. Anyone know enough Latin to suggest a new name?
It seems the best way to pump up awareness in today’s culture is to find a celebrity with the disease. Look at what the Michael J Fox Foundation has done for Parkinson’s. Know of any living celebrities with RA?
Yes, yellow is nice. Someone has pointed out that yellow belongs to Lance Armstrong. I think there are lots of colors re-used. We shouldn’t choose based on that. There are hundreds of causes & only a handful of colors.
People don’t have a problem with the word “Rheumatoid,” although it’s inaccurate according to the Greek, right? It is the “A” word that bothers them. I find if we look at articles more than a couple decades old, some use rhematoid disease. My own rheum doc has never used the “A” word with me. I’ve read several comments on this blog of docs who despise the “A” word also. I read what year RA was offically adapted, and I can’t find that right now, but I think it was within the last few decades. Interesting link.
Yes, we have had the celeb discussion several times here. I’ll look for a link for you. Kathleen Turner is one who wrote a book about her RA. Not helping. They didn’t use a celeb for breast cancer. How about we study the successful movements. Some other famous people with RA: Lucille Ball, comedienne; James Coburn, actor; Auguste Renoir, artist; Meredith Boyd, former Miss USA contestant; Camryn Manheim, actress. It can be part of the solution, but it’s not the reason diabetes is understood now. I honestly believe that the “invisible” nature of most of RA’s symptoms is the problem. If that’s so, then the celebrity would also be discounted – something that apparently a few of them have said they feared. Our problem is that even the doctors and the AF often doubt the severity of symptoms and write about low pain tolerance or hypochondria.
Edit/ add: I’m too tired to do a good job here. See the link under the post or use the Tags list to see more posts about Awareness; the associated comments pages would relate to these questions.
I must confess I know no Latin or Greek. But I do know that rheumatoid arthritis has a Latin etiology.
What i understand as the etiology is that it “means” joint inflammation resembling that of rheumatic fever. Does anyone ever know what rheumatic fever is anymore. I can’t say I ever even heard of anyone with it.
Arthritis means something like joint inflammation and since this is such a big part of RA, I don’t see it coming out of the name.
I was talking with one of my kid’s teachers and some how we were talking about kids running in the halls. She said that when correcting kids caught running in the halls she was always told to tell them to walk. When you say “don’t run” or “stop running” all the kids hear is what you said last. I wonder if that is the same with RA. Since by a similar analogy the last thing you hear is arthritis. Something to think about.
Another thing I’ve noticed about RA is that when you google it you always see pictures of mangled hands or someone holding their hands or a knee. So right off the bat the visible images discount what this disease truly is.
Has Oprah or Dr. Oz ever done a show on RA that you know of?
That is an interesting point about the last thing heard.
I took Latin back in high school & I looked it up when I wrote RA101 2 years ago. Arthritis means inflammed joint (“itis” is inflammed). The other word is from the Greek for “flow” – I have taught intro Greek for high school. And I looked it up when I wrote about it in RA101. So, the rheum part was a misnomer based on a misconception of biology. But that doesn’t matter that much now. Diseases do get re-named. I can think of a few. What about ALS or CFS or JIA or bi-polar. Re-naming RA was never my crusade, but it has been a constant drumbeat from patients as long as I can remember.
Logically, there could be a class called “Autoimmune Arthritis Disease” and it could include Lupus, AS, PSA, JRA, Reactive Arthritis, and RA. Lupus and AS do not have “arthritis” in their names at all even though “joint inflammation” is a symptom. It is clear to all that they are rare diseases which have “arthritis” symptoms but have nothing to do with OA (arthritis). Just thinking this through, I don’t see any logical or reason why “Rheumatoid Autoimmune Disease” would not be perfectly suitable to science or medicine. My personal guess is that doctors don’t care very much. It is the AF that would not approve of the change. Thank you for the discussion. I think this is helpful to all of us, including me.
Several readers have mentioned writing to Oprah & Dr. Oz. One has a campaign to get me on the Oz show. That would be scary.
Kelly, that would be awesome not scary! There are so many people that follow Dr Oz… you would be able to deliver our message to millions. I have mixed feelings about him/his show, but the fact is, many people take notice when he talks about something needing attention, and that’s exactly what we need!
I can’t make you, or get you on the show, but if the chance comes, please take it… you would be able to talk about the name and how it’s confusing, and talk about the RPF and get the word out! I’ll have to join the campaign!
YES!!!
I have spent so much time explaining to people what RA is and what it is not. Usually, I have to correct people when they say “Oh, it’s just the same arthritis you have when you get old.” I have to explain that RA is not your “Grandma’s arthritis”.
I honestly think that the more people that speak up, the more people will get it.
Hi Solace,
Funny you should say, “NOt your grandmother’s arthritis” because that’s exactly what my arthritis IS and why I wasn’t surprised when it hit me (not that I was thrilled either – somehow all I could think about was how she, despite loving her grandkids, barely got off the sofa and did anything, and even her smile was full of pain… and then I said, Uh Oh….)
In my case, it runs in the family. It skipped over my mother and hit me. Two of my four sisters have polymyalgia rheumatica (which is supposed to be temporary, but who knows). I also have a cousin with RA, (and now lymphoma). Her mom (my aunt) also had RA.
No one in the family is a pity-party but I guess in a way, that makes me feel less alone when I remember that. However, I don’t live near any of them, and my cousin keeps pretty much to herself. So – I struggle here too at times. I’ve thought about trying to start a support group, but easier said than done. in the meantime, I try to spread the good word about Tai Chi for Arthritis which helps me a lot, and also diet (avoid red meat, and for some people, tomatoes, eggplant, green peppers and potatoes), and also the antiobiotic protocol, which seems to help some people when nothing else does (for more info, visit xxxx). I wonder if Kelly knows about that…
Ellen (NY state)
[Edit: Note, above link removed which has been posted on this site dozens of times by their group]
The “Within Our Reach” campaign uses a gray and sort of turquoise color. It might be good to identify with that.
Which company is that?
It’s a fundraising program for grants for RA research, I figured everyone knew about it. Maybe I’m wrong? Have a look, you would understand it better than I do.
http://www.withinourreach.info/index.html
(I don’t think my comment posted, so here goes again)
I think, I fear, that the only thing we can do to gain the awareness we desire, is a name change. I like to say, as someone else mentioned, “an auto-immune disease”. Or I’ll say RA, but that is still short for the “A” word… so our problem with arthritis misconceptions remain. I think ppl automatically close their minds when they hear that “A” word, so I don’t know that a color or celebrity would help, but I’m game if you all think it would. Maybe if we had a celebrity lobby for a name change? Would that help?
Thank you for expressing what I have felt for years…so much research on other things and so little for us. I agree that RA should stand by it self and not fall under the category with Arthritis. It is by far so much different and harder to live with! I have struggled with it for over 14 years and doctors really don’t understand what we live with.
How do we educate the public on the struggle and teach them that we are looking for more research. What does it take for awarness?
Betty,
I fear you are right about the doctors. I’m going to do all I can to educate the ones that will listen.
If we stick together, we can do more to educate the public. Let’s keep talking about what we can do here and see if we can act together. I have some ideas, but I want to hear from others, too.
This is something that has been weighing on my mind considerably and is very pertinent here in New Zealand right now.
October is Breast Cancer month, September is Prostate Cancer month, September 22nd to 28th is Arthritis awareness week. I think that says plenty to start with.
I personally fully support all of these cancer awareness initiatives – my mother died of breast cancer when I was 11, I work in a substantially male environment where we have several prostate cancer survivors, I understand the importance of awareness and funding in these areas. Breast cancer is the most popular as far as fundraising and “Blue September” does not have a high enough profile considering that prostate cancer kills more men than breast cancer kills women, but I think the profile popularity comes down to the fact that people like boobs more than the other option…
But when it comes to arthritis awareness week, which includes RA, the support is severely lacking. The advertising campaign is disastrous – it depicts a few celebrities trying to do everyday things like get money out of a purse or text, while wearing oversized gloves and looking perplexed. Every time I see this ad I cringe. If this is what people believe that I suffer from then they must think I am a hypochondriac. There is no mention of any other body parts or the pain and other consequences even for osteoarthritis.
There is also no information leading up to the campaign unless you are a fee paying member of Arthritis New Zealand (which I am not – I was diagnosed last year and becoming a member feels a little too much like acceptance, which I’m not quite ready for).
By the way, in New Zealand the arthritis colour is orange, and we have a orange gerbera as our flower. It is bright and beautiful but is associated with Arthritis NZ, who are doing their members a disservice by telling the television watching public that arthritis is an uncomfortable annoyance and not a debilitating disease.
Thanks for everything that you do Kelly – love your work!
Fee-paying member? Bother. I agree with one patient who said she paid her rheumy & that’s her contribution.
Jo, when you say that Arthritis NZ is “doing their members a disservice by telling the television watching public that arthritis is an uncomfortable annoyance and not a debilitating disease,” it sounds just like what I hear here in the US from many patients about our AF. When I looked at the website for Australia’s AF, it looked like it was connected to the US. Do you think NZ is connected also?
Why do you think they do this? Do you think those in charge understand?
I wish my disease was just like wearing oversized gloves. I know that it is hard to convey pain, stiffness and fatigue but there must be a better way – although breast cancer would never show a post op mastectomy to get more money as it would just freak people out!
I have no idea if AFNZ is affiliated with other countries, I am just learning about what they do and what services they provide. I agree that me paying my rheumy is enough of a contribution, although I might change my mind if I need additional support later…
It must be difficult to advertise for 140 different types of arthritis, perhaps that is where the problem lies.
I’d personally rather not be lumped in with 140 other things that are no actually related to RA. What about separating autoimmune arthritis diseases from “arthritis”?
I would like to see it, but I’m afraid it would never get the attention it deserves. Everyone just views it as an “old peoples” ailment. If we could get the name changed from RA to joint cancer we might get some attention.
Unfortunately, the only time the general public hears about RA is on TV commercials. These commercials show people taking a shot and then getting on with their life. Presto chango everything is back to normal. I don’t know about most RA suffers but even with the shots and meds the disease continues to play a large role in my life. Gives people a very skewed view of RA.
Great point, Mary.
The ribbon symbol is overdone. The Heart Association (heart disease kills more women than cancer) tried a long waving red ribbon and ended up going back to their red dress.
If we can’t get the word “arthritis” dropped maybe we could play up the initials and make RA the common name, just like MS. I’ll bet there are people who know someone with MS who couldn’t tell you what it’s whole name is, but they still are aware of it’s damage.
It’s strange, people don’t seem to know what it is, and yet if I tried to get a job and said I had RA they probably wouldn’t hire me – which means that someone knows it’s not just a sore knee.
great points, Kay. What can we use? I was wondering about a key?
Hmmm, I think the symbol is really important and is worth taking awhile to think about. The heart association’s red dress campaign took a long time to catch on because people didn’t relate to the dress (especially men) and the red didn’t come across as related to the heart.
The autism puzzle piece is great because they are searching for pieces to prevention, but the autistic brain is a puzzle in itself.
Maybe we should identify what we exactly are after first: a cure? prevention? better treatments? educating people about what RA is and isn’t? We can’t get all those through to the public at once. Do any members know someone in advertising? LOL,, I sound like a PTA mom, sorry!
we do have plenty of RA’ers in advertising. We just need a small core consensus w/ some motivation & then to make the effort together.
Here is a page that shows lots of colors and conditions – click here.
One thing that came to mind when comparing to cancer or diabetes is the association with death. If we consider cancer, all cases lead to death, subject to the effectiveness of various treatments or remission. Same with Type 1 diabetes, one could be dead in a day. I am newer to RA, diagnosed about 3 months ago, and so am no expert; clearly RA can cause damage that leads to death. But people don’t see it that way; the drama of cancer or diabetes associated with near term death is much more profound.
A further comparison is complexity. Cancer is simple, got some bad cells growing that will kill you. Diabetes, sure, easy, ain’t got enough insulin. RA is more complex; “an autoimmune disorder that attacks the synovial membrane” — (general public response is: huh? what the heck does that mean?). The immune system is already poorly understood by the general public, let alone the term “autoimmune”.
I wonder if we have any creative publicists who could play off the term “RA” with — “RA” the sun god? http://en.wikipedia.org/wiki/Ra
Roland, the Ra sun god thing is interesting.
Mortality? Look on the Tagslist on the right for Rheumatoid Arthritis Death & read through a few articles – just click the arrow. I personally know of a number of people who have died prematurely due to RA, including my grandfather. Also, there is a new book called Death by Rheumatoid Arthritis here is the link – click here. I’m interviewing the author on the blog soon. Sooo, there is death associated with RA in reality, but you are correct that it is not associated in *perception.* That is what we need to change – the misperceptions that a little “arthritis” is the problem instead of a serious systemic disease on par with angina or hogkins disease. Look at this article by a very prominent RA researcher – click here Read page three especially. He says they are the same in survival rate. I hope I’m not depressing you, but I am determined at this point. I know we need to do something and I think it’s time.
Roland,
I hope you were being facetious in your comparisons to cancer and diabetes. These are not simple diseases at all. In a sense you’ve proven a point. Thinking that cancer is just some cells gone awry is the same as thinking that RA is just a little discomfort and some sore joints. Cancer is a very complex systemic disease. Diabetes is as well. With diabetes you also have the issues of losing your eyesight, losing limbs, etc. You face that on your way to death.
Let’s not denigrate their suffering for lack of awareness for our own tribulations.
I did not take it that way. I thought he meant he was new to RA and did not realize whether RA is associated with death like those are.
In many ways, life with diabetes is similar to RA in that it can affect all bodily systems. Diabetes is the closest comparison I can find although for stats reasons, I’ve seen RA compared often to Hodkin’s lymphoma (mortality rates are the reason I guess).
Plenty of RA patients have had both RA and cancer or diabetes. Unless it is a very mild RA or they have been living on Mars, they would still agree that the RA awareness situation is dismal.
No,I was not trying to be facetious or make a joke. My apologies if I offended anyone. But my wording was intentionally simple to highlight my idea about public perception. My mom had Type I diabetes for over 50 years, and I saw it first hand.
I was just trying to compare RA to the others in some more tangible way, hoping it would give us insight on why RA isn’t a well known “problem disease” and what we could do about it to promote RA awareness. Often when I try to analyze an issue or some tradeoff, it can help to break it down into some component parts or characteristics. In this case a comparison of RA to cancer or diabetes might benefit from more closely viewing the individual characteristics. In this example I thought we might get insight by writing about the 1. the “complexity” of these 3 diseases and 2. the mortality of these 3 diseases (as perceived by the public). There may be other characteristics as well that could be compared such as the impact on lifestyle, potential for a cure, affected populations, causes, and others. I just didn’t write about those in this example.
Now that I think about it we could discuss “causes”. We know that many cancers are caused (or at least heavily influenced) by environment and behavior such as lung cancer and skin cancer. So a great deal of awareness about cancer is created through prevention messages. But the accepted statement about RA is that the cause is unknown. Now there are hints about RA causes (from what I’ve read) that include genetics, nutrition, smoking, infections, hormones, and a few others; I believe none are conclusive. So…. in order to create awareness about RA, a message like this is probably not very effective: “Hey, we are suffering from RA, we need more research”. A message like this might be more compelling: “Take a look at how bad RA can be. Nobody knows the cause, but it will help to stay healthy, watch your nutrition and get tested early”. (e.g. guilt and fear always get more attention than complaints)
I am no doctor or marketing person, but am simply trying to help stimulate thinking and discussion on the matter.
Wow. These are points that we need to explore further and I hope that you will continue to discuss these issues here and on other posts. You have given me a lot of food for thought. We do need to get more detailed about what would make the message “heard.” RA is incurable and unpreventable and that does not make for an inspiring message in itself. We need to think about how to change perceptions by asking “what would make people care?” also. So much to think about besides a color. Thanks.
I think a TLC show is in order. Think of all the awareness television raises for different things, even some of those medication commercials have raised some awareness for us. So what if there were a real life story like the ones on TLC following the everyday struggles of a person living with Rheumatoid Autoimmune Disease (ok Rheumatoid Arthritis for now because we haven’t yet succeeded at a name change) That is a show I would watch religiously.
This is a great idea & I’ve heard it from a couple people – I wonder whether anyone is writing to the networks about it.
Some of those show ideas were ‘discovered’ on youtube.
Thanks Kay I had no idea. Alright everyone one who is brave enough to start a youtube show? If anyone does have a youtube they already use for educating people on RA please get us a link because if I am right we can like the video or is it the amount of views that count…anyways I know that us all liking or watching it will help.
I’ll do what I can to help, but I’m not going on camera!
hi kelly,
yes, i believe it’s time for that…people tend to categorize RA as just “arthritis”. they don’t know that it’s an auto-immune disease and that even children can have it.
whenever people ask me what’s wrong with my knee, i tell them i have RA and they all say “you have arthritis?! but you’re young…you’re just in your twenties” (i hate hearing that line).
i hope there would be an awareness week or month for auto-immune disease, particularly for RA (just like breast cancer awareness month), so that people can get at least a glimpse of what RA really is and not tag is as some other arthritis/illness.
well, i hope our voices can be heard and can educate the people around us.
God bless always…sending my love to all RA warriors out there! 😀
Charizza, do you have the same breast cancer awareness in your country as we do here in US? Do other diseases also? Thank you for your great encouragement always. 🙂
hi kelly, i am not that sure if it’s the same with US. so far, i’ve seen awareness campaign for breast cancer, cervical cancer, diabetes, AIDS. these are all that i can remember…hahaha… :laugh:
i told my sister (a licensed PT) about the need for an awareness for RA and how irritating it is to be misunderstood sometimes. she told me that educating people about it would make a big difference. :-))
I remember trying to talk to a rheum doc once about RA awareness and he said, “People know enough.” He had no clue what we live with! You have a good sister.
While I think many fine points have been made in these comments (and, of course, your blog post Kelly), there is one point I don’t think we have stressed enough.
When do physicians take a disease seriously? Is it when public awareness is raised, thus resulting in more patient inquiries about RA? Is it when there are better drugs that effect better outcomes? Is it when a foundation raises money for research, thereby making it more profitable to specialize in the subject disease?
I certainly don’t have the answers to this question. Heck, I can’t even get diagnosed! But I can recognize a trend, and the most pronounced trend I see in all my reading is that a vast majority of medicos minimize the symptoms and seriousness of RA. That theme is repeated in all forms of media.
Maybe this is just a chicken/egg conundrum, but I believe that the key to getting a little respect for RA patients is when the American College of Rheumatology begins to properly communicate the gravity of the disease and the pain, disability and loss of quality of life that result. Of all sources, they own the most power to bring change.
(Off my soapbox, now).
Oh, and I forgot to suggest a color…
Black and Blue. ;D
I’m so glad you said this Jackie: “Maybe this is just a chicken/egg conundrum, but I believe that the key to getting a little respect for RA patients is when the American College of Rheumatology begins to properly communicate the gravity of the disease and the pain, disability and loss of quality of life that result. Of all sources, they own the most power to bring change.”
I’m going to give that a lot of thought. I know they work very closely with AF. Wish I knew just how to get this through to them, but I’m working on it.
The breast cancer campaign makes us aware how many women are affected by it, how fatal it can be, and tips on prevention/early detection. After those awareness components comes the fund raising for research.
I think one reason for it’s success is simply that it’s cancer, and if we can unlock a cure for one kind we will soon be curing all kinds. So, people who donate to a breast cancer cure are donating to cure every kind of cancer.
We aren’t at all in that position so I’m not sure modeling a campaign after breast cancer will give us the best results. We do want understanding of the serious scope of the disease, and we do want people to know how prevalent it is and we do want money for research, but frankly *dodging the bullets* that is all about US. Do we have anything to offer the public? Tips on what to look for, or how to know when it’s time to go see a rheumatologist? And how will their donation help mankind?
The people best suited to answer those questions are the doctors. Or at least, in the eye of the public they would be the most qualified. I’m wondering if Jackie may be on the right track. Maybe our beginning steps should be through the ACR and the docs. We can always go in a different direction later.
When I see them next month at ACR, I’ll tell you said so! Thanks for the great conversation!
Ugh, I’m not happy with my post, it’s so hard for me to explain things when I’m not face to face, but anyway, it’s great that you’re going to spend time with them next month. Do you ever have time to sleep?
Haha. Not enough. 😛
Okay, so now my friend has told me that RA already has a famous spokesperson, Deborah Norville. I’m too tired to even research this one, but can I assume this is incorrect? If she were a spokesperson it seems that everyone here would already have heard it.
Kay, you can judge for yourself how Deborah is doing by watching the videos. She was hired to be the hostess of some videos created last year by the company which makes Remicade. I’ll put links here to where I’ve discussed the videos here on the blog click here and click here. It’s true a celeb would be good – but he /she has to be doing what we need to be done for it to help. There have been some famous RA patients. They just haven’t taken this up as their cause for whatever reason, which is certainly their right.
We need to change the name of RA… HAVE TO. Otherwise it will always be something that can’t possibly be as bad as grandma’s knee pain (I’m way too you for that, right?) or something that everyone thinks can be cured with gin soaked raisins and exercise.
Color idea: blue, for the obvious joint damage which resembles osteo, and dull red, representing the heart and internal organs. Just a thought.
Hi Kelly & RA Warriors,
This article hit the papers here in Australia today & I thought you may be interested to hear of the damaging effects of the “Pink Steamroller”
http://www.smh.com.au/lifestyle/wellbeing/pink-steamrolls-all-on-path-to-cancer-kudos-20110108-19j9n.html
Monica, thanks for the info. I’ll pass it on. You might be interested in something I wrote during October – breast cancer month – as part of a response to what is being called Pinkification. Here is the link to my blog on WEGO Health.
I’m glad you found this Kelly. I tried to send it to you direct, but couldn’t find a contact. I’ve sent it along to Alicia Staley, who is going to use it soon.
Keep up the great work!
Monica, back online after a week. One of the things that fell through the cracks on me last week was to send that link to Alicia. LOL. I feel relief. God knows all. 😀
I did think that was a good article – still may quote it or respond. Thank you.
Oh gosh, yes, we need more awareness. I am SO tired of explaining to people over and over about my fatigue and pain. I’m not the type of person who sits around and complains. If you saw me sitting at home, you’d probably have no idea that I have RA, because I don’t complain, I just keep my brain busy, and I try to laugh as much as possible. So, when my friends, or even people in my family refuse to understand that, no, I can’t go walk around the mall, or I can’t “just go around the block for exercise,” it really makes me mad. I’m so tired of explaining it. I’m so tired of linking them to sites and making them read about it, knowing very well that they’re only half paying attention. Just so tired.
I’m not that creative, so I have no ideas of logos or campains (get it? campains, no g? lol), but we definitely need more awareness, and I’d love to spread some around!
I do love your site, though, I have to say that. Before I went into remission, the only real site I found was a verrrrry slow arthritis association site that was barely usable.
Thanks!
Julie Robbins! Of all the things that can be done for RA patients, changing the name to Rheumatoid Autoimmune Disease is, in my opinion, one of the best ideas. How the disease ever stays on the “arthritis” list is beyond me. I think it’s because it affects the joints. It was called this before doctors knew how much it affects other parts of the body, from what I’ve read. We know a lot more about the disease now and so the name SHOULD be changed. Information, education, awareness…these are all necessary. Informing the family about what this disease really is such a hard thing. My adult son still has a hard time understanding it. He loves me, but just doesn’t “get” it. Sigh…We have a long row to hoe, as grampa used to say!
My 16 year old daughter was diagnosed with Juvenile Rheumatoid Arthritis in January of 2012. The two months prior to that day were the worst of her life and mine. Severe joint pain, lack of full mobility in her arms, knots forming on knees and feet, and many sleepless nights are some of the things she had to deal with. Because of her age and the way her symptoms were manifesting, diagnosis and therefore treatment were put off. She is now responding to the treatment but still has flare ups, most of which occur in her shoulders. She’s unable to raise her arms above her chest so I wash and dry her hair for her on these days. It’s difficult for her to carry a text book at school when these flare-ups happen. Her friends have been supportive but she keeps so much from them. I live for the days when she wakes up pain free and can do things without assistance. She’s a normal kid. That’s who faculty and friends see at school is the girl they know is sick but doesn’t look it. When she misses school because the pain is too great, she lies. She tells friends she has a virus or a cold. She doesn’t think they’ll understand. And they probably wouldn’t. It’s hard for people to fathom that she can be just like any other kid one day and hardly able to move the next. But that’s how this disease works. I want to raise awareness in my community and the schools so that my daughter doesn’t have to hide her pain any longer. If you know of some child that has a disease in your school, whether it’s JRA or something else (I’m talking to adults and kids) take time to learn about it.
I so badly want RA awareness to be widespread like Breast Cancer is. I think the color for RA should be yellow! It’s bright, it’s cheerful like a lot of the RA patients and it brings attention. I feel like it’s a color of hope.
I hope to spread awareness of RA on my end as much as I can, but I’m only a little spec on the radar. I know that you are an awesome advocate in spreading the word and I hope this disease gets the awareness it deserves; especially with the increasing numbers.
You mentioned about changing the name; I wonder what does that mean? Changing the disease name of Rheumatoid Arthritis to something else? I hope you’re doing well.
-Aimee
Hi Aimee,
The ribbon we revealed about a year ago is gold and indigo. Rheumatoid disease is used in a lot of medical literature & is a historical term that we support. Here are some posts that might help explain that.
http://www.rawarrior.com/awareness-ribbon-for-rheumatoid-arthritis-finally/
http://www.rawarrior.com/5-reasons-rheumatoid-disease-is-a-better-term-than-rheumatoid-arthritis/