What Can We Do About the Rheumatoid Arthritis Awareness Problem?
Why do I believe we need Rheumatoid Arthritis Awareness?
When I got full blown Rheumatoid Arthritis, I had no idea I’d gotten stuck with an unpopular disease. It was a surprise when one person after another brushed aside my explanation with things like, “You are too young to have that” or “Oh yeah, I have that too.” I got a lot more quiet about it.
Gradually, I realized that I was not only stuck with an incurable disease, it was one that nobody cared much about. Every patient I talked with had found this same invisible wall when talking about RA. Some tell of family members who don’t have compassion or employers who won’t tolerate invisible pains. I do know patients who have been fired due to RA and others who hide their diagnosis to keep a job.
Public perception of RA is atrocious. Sources like ABC News publish ridiculous statements that lead readers to think that it’s easily treated. Publications by the Arthritis Foundation make it sound as if the pain of RA is exaggerated by the patients. When even they act like RA can be treated by natural means, what can RA patients say to their friends who pressure them to give up chemo in exchange for the latest juice?
I believe that Rheumatoid Arthritis Awareness is the answer to these frustrations that RA patients experience. It is the answer to the bad press. It is also the answer to the devastating facts of the Rheumatoid Arthritis statistics. I believe it is the answer and I believe that it is time for it.
But what is it?
What will Rheumatoid Arthritis Awareness look like?
This is a discussion we’ve been having here on the blog. I hope you’ll take time to look at the two posts in the past week concerning RA Awareness: Would RA Awareness Make a Difference? The Good, the Bad, and the Ugly and Is It Time for Rheumatoid Arthritis Awareness? The links to the comments are at the bottom of each post. The comments in this past week have been incredible. Much of those discussions have taken place on those last two posts.
Some new things people are doing for Rheumatoid Arthritis Awareness right now:
- Please take part in this conversation if you think it’s important. You can post your opinions in those 2 discussions and also share your ideas here in answer to the questions below.
- Post the RA Info Button on your blog, Twitter, or Facebook page to factually inform about what RA really is. This is especially good if the site is not already about RA.
- One reader is writing emails to Yoplait yogurt asking them to use blue lids for an RA awareness campaign.
- Another reader is writing letters to the Dr. Oz show asking them to do a show on RA, interviewing patients.
- Talking about RA on blogs or pages that are not already about RA – here’s one reader’s post. What a great idea.
- Watch and “LIKE” my Woman’s Day video right on YouTube so that it becomes more popular & is viewed by more people who don’t have RA.
- Write to Woman’s Day about doing an accurate piece on RA.
- Wear an RA awareness t-shirt.
- Stay tuned for MUCH more from me and fellow readers. It might be true that what each of us can do is limited, but together, it’s a different story. That is definitely where we are headed.
Please comment below regarding:
1. Share your own reason that we need Rheumatoid Arthritis Awareness.
2. Share your idea of how we can accomplish RA Awareness.
Recommended reading:
- Rheumatoid Arthritis Pain Is Not Our Only Pain
- Rheumatoid Arthritis Natural Treatment: The Beachcomber Article
- Arthritis Foundation article on hypochondria and RA
- Woman’s Day Rheumatoid Arthritis Article: A Video Appeal
- List of all posts on this site about RA Awareness
I really would like to set a date and rally in DC. Ya know every year the funding gets cut more and more, like it isnt a real health issue that needs monies allocated for!!! This is pure bullshit, i suffer as well as my 5 yr old daughter. She wants to go to heaven, she prays for God to come get her and take her away fromt his life here where she has pain. This is a 5 yr old!!!! We really need to go to Dc, Be seen, Be heard, Be advocates in our own way! We really need to do it for the ovr 300,000 kids. They deserve our help in getting the word out KIDS GET ARTHRITIS TOO, not just an old persons disease that we will all get someday! Oh Gosh dont get me started, i get all upset over the very little people know about RA, the very little or even deceiving info that people, news, magazines, and so on do tell about arthritis. it is time we get together, RALLY for our Cause, someone spearhead this, lets go to DC and be heard, seen and known! im game! and i have many people who are willing to go!
Tracey, Thank you so much for sharing. Great ideas. We need to do it for your daughter and all of the children who could end up with RA / JRA ,etc.
Tracey you know there is a rally every march for kids to share their stories in DC?? its been going on for years, its called the kids advocacy summit. Its an event by the arthritis foundation
It’s really funny to be seeing you rally cry for RA Awareness when I’ve been thinking all along since finding your blog that was exactly what you were doing. 🙂 I repost the entries from here and many other RA-related medical websites as often as I think they’re good articles… (most are yours!) And at first I thought I was being proactive. And then I got scared I was being pushy and annoying to my friends but kept posting things anyway.
AND THEN MY FRIENDS STARTED REPOSTING THEM ON THEIR WALLS AND WEBSITES. I couldn’t believe it. At first I even felt tremendously guilty but the final truth was – My friends and family were reading those blogs and journals! And after a while they came to understand them. And as I post things and find them reposted, I know people who don’t even know me could be reading them. And that’s amazing.
It’s a small way to be proactive and raise awareness. But its really done a great deal for me…
Sounds like you are already involved, too Raye! 😀 You are doing an awesome job passing on the info. We just need more of us so we can do even more. You are right – awareness has been on my radar since day 1. It’s listed on the “sign over my desk” – click here to see.
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We need awareness badly because it affects more than just the one with RA! It is hereditary…I gave it to my daughter who has been diagnoised with Scoratic Arthritis! When she didnt have insurance she was covered in leasions from head to toe! It broke my heart i couldnt help her..Very hurtful and uncomfortable for these folks..to say the least! Also affects family around you! My husband thinks of Ra as a Mental thing! Me and his mother have RA and Yes when we have a flare we do get crabby and cry! Also my family and friends do look at me and say it doesnt look like anything?! I was diagnoised at 8 yrs old..early 60’s..and the only treatment back then was 4 aspirans a day! It went into remission and returned when i was in my 30’s…Went to the doctor and he said i didnt have it..Years later i Moved back home and went to a doc there..He said i didnt have it! Naturally i thought i was a hypochondriac! Later went to a Rheumatologist and Bam! There it is! I went from a fully funtioning painter to staying at home disabled in no time! Awarenes is so important…thank you
Judi, Thank you so much. Sharing stories like that will help show how important this is. I hear stories like yours all the time. I hope you found a way to get treatment for your daughter. 🙁
Thank You Kelly! Yes my daughter got a job w/benefits and also got married! So she is doubled booked! Still need to raise awareness somhow! Thanks for the reply..
Here’s my suggestion for a silly way to draw attention to RA:
Join us for the SUPER NAP FOR RA. On Monday after Superbowl Sunday everybody can show their support for the incredibly misunderstood and devastating disease of rheumatoid arthritis. We need more awareness and research and you can help by sleeping at noon for 20 minutes on the day after Superbowl Sunday. No need to run a marathon or even take a walk or a bike ride and best yet, get donations, for this cause – you can show your support with your nap. (Check with your doctor in case you’re not up to a nap – or at least have your doctor give you a note that says why you’re sleeping on the job.)
Jay, I really liked your idea when you told me before. I think we can work on this – I thought about mentioning when I posted this morning but I wasn’t sure we should let the cat out of the bag. Anyway, let’s keep the fantastic ideas coming! Jay, this is a real winner.
Kelly, I have gotten much braver since finding your blog and the RAW facebook page. I still tend to feel shy about reposting articles and blogs. On the other hand , how will others truly understand this disease if we don’t get the word out? I fight the embarrassment that I believes comes from the feeling that one doesn’t talk about one’s own suffering or complain openly. I have become convinced that by bringing awareness to this disease, it will ultimately help others. I comment frequently on the RAW facebook page as I feel safe to do so there. I am by nature, an encourager, and find that easy to do. I will strive to overcome the ongoing shyness of speaking out in other formats.
Dear Kelly,
I agree that an awareness campaign is essential. Many other conditions have been very successful but mainly with large charity backing such as breast cancer, cancer research, diabetes and alzeimers. Other government campaigns have assisted conditions such as aids.
With something like RA word of mouth seems the way to get something going and to allow it to snowball. This will take constant effort and reoccurring frustration I guess.
I think t-shirts/merchandise are a good way forward, perhaps with fairly blunt and indignant messages in a simple format but they should all be recognisable as RA awareness items. I have an idea or two on this front.
I have said before that I don’t have diagnosed RA but the 3 reasons I suspect it are as follows:
1) Similar symptoms to RA.
2) Failure to diagnose anything.
3) Being made to feel I am imagining it, making it up or being a hypochondriac.
The fact that points 2 and 3 make me think of RA underlines the need for a sustained, purposeful campaign.
Good luck with it all and count me in regardless of how my story goes.
Mark
Thank you Mark. It’s ironic – it seems like an RA diagnosis is hard to get and no one really wants it, but once you have it, you have to become a type of advocate, trying to convince the world you are really sick?? Weird.
I think if we band together, we can do what the other movements have done. What if we get a drug company to fund an awareness campaign giving voice to patients? What if we appeal in great numbers via a petition to the government?
Thanks Kelly,
Astonishingly I am already trying to convince everyone I am unwell even before any diagnosis. I don’t want to be sick.
For example after three years of trying I was finally accepted for London Marathon 2011 today and one friend sent me a message saying that ‘maybe your head will tell your body to get better as you now have a goal’.
Drug companies would be good to approach I think, petitions to governments in my opinion get accepted and filed. To ask for funding you would need a good plan, almost like a business plan. It is so difficult.
Establishing contact with sufferers may be a good starting point but gathering them into one group is very difficult.
Your website appears to be the only place on the planet for real RA awareness so far, so guiding people to you seems a reasonable way forward.
Food for thought anyway.
regards
Mark
I love your idea Kelly..Get a drug co. and a petition! I can get lots of names! Good job as usual Kelly!
Thanks, Judi. More ideas to come. I hope everyone will stay tuned!
I agree that we need to get the word out about RA! My Mother in law asked me once what the difference was between RA and OA… I was excited that she appeared to be truly concerned until she changed the subject a minute into the answer! I remember being scared and releived at the same time when I was diagnosed. I was scared because I had watched my Dad go downhill so fast, plus I worried that I could pass this on to my own children! The releif was the fact that at least I know that this is NOT all in my head and they have treatment options to help. I would be willing to write to Dr. Phil, Ellen Degeneres, Oprah, whoever to help bombard them with requests to help bring this disease into the spotlight it deserves!
You can also count me in for the 20 minute nap! Great idea!!!
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Whoa, this is such a great subject! Thank you Kelly! I am willing to do anything or go anywhere needed to be to raise awareness…I posted on the FB site one of the first things is to change the name…I am soooo tired of well-wishing friends/family making suggestions as to what I should take, diets I should do….(one of the sweetest things that did happen tho was my son saw an ad for Simponi and wrote the name of it on his hand so he wouldn’t forget:) Ironically it will be the latest one to try….In any case I have had a repeat conversation with sooo many people about what RA is, they hear the A word and well, you know….rub on this, drink that, etc. All well meaning, but they have no idea what RA is and to be frank, up til a year ago, I didn’t either! I did come up with a new name for our disease…how about “Invisable Rheumatoid Auto-immune Disease”..aka IRAD…take that arthritis out….with the insurance companies that may never happen, but it sounds a bit more targeted at what we have!!!! Keep us posted and we need to keep fired up to bring awareness to the world!!!!
Haha. I love your son’s idea for RA awareness. Can we write on people’s hands? LOL. Thanks, Nancy. More to come, right?
I started a traveling balloon on Facebook. Please feel free to pass it on to your friends. It’s a start to make people aware.
Good job Maria. :rainbow: We should keep things like this going all the time.
Have you seen this? http://iaamovement.org/About_Us.html
They have some R.A. awareness “commercials” on YouTube. They’re not great, but I think its a good start. One is called “Fatigue” and another called “Getting Ready” and they end with the words, “…its time you understood.”
I have mentioned to myhusband and his sister (she is a good friend and my running buddy) that I feel rheumatoid arthritis awareness is underwhelming at the moment and very important. I often point to the pink ribbon campaign and admire its effect but say I now wish RA could get that kind of focus. I dream of someday having an organization Like Susan Komen foundation but for RA.
Right now I am not sure how to approach it I guess. I hope someday my love of riding horses can be a way I can increase awareness as my RA becomes more obvious in my riding and at the same time I get better at it. I recently told my trainer that I pray I never have to ride para (the term for any rider who cannot ride in standard competition without compensating equipment) but if I do I want to do it on my current horse and with style- and be one of the first para riders to jump! And if I do I want people to know why…I want people to know about RA. A bit of a rabbit trail….but I guess my point was that I want my life to help raise awareness. I want to be an example of faith, hope, courage, and strength in RA.
It’s funny- I named my blog (that I admit I don’t update enough) RAWR and still haven’t explained why and I will try to explain here because it fits- my sister and I use RAWR as our word to remind each other to keep going when its tough and painful (we are runnign and riding buddies), that we are awesome and strong, and that no matter what, we must keep going. (RAWR as in RAWR I’m a beast!) RAWR is my reminder that I can fight and win- even in my fight against RA. I think awareness needs to be that reminder for everyone as well; not just educating the masses.
So kind of a lot for one comment- but I totally agree we need more awareness of RA. I also think it needs to take a variety of forms and should include an element of trying to help people with RA stay inspired to keep up hope and stay strong.
That’s funny Valeska. I always assumed that was the reason for the name of your blog. ;D
What’s stopping us from working toward a Komen foundation? Gotta start somewhere, right?
As far as what’s stopping me….mostly energy and money. Sad excuses I know. But it seems too daunting right now. I keep hoping I can get the ra monster under control a little more and get my old energy back (haha unlikely but I still hope). Right now I think any sort of non-profit foundation is living on the “maybe someday” list until….well until so many things. Isn’t that the way of it? Constantly waiting for the dust to settle. But mostly being able to afford the time off work it would take and right now I use all the time off I can afford for RA on flares and appointments. Maybe we need to find someone without RA to take it on lol?
Maybe we can take one baby step at a time – since we are the ones who know the story that needs to be told.
Before I was diagnosed with RA in I thought that Rheumatoid Arthritis was just some mild aches and pains and sometimes knobby hands.
RA is a horror of a disease. I never knew that a person could endure such pain without losing consciousness.
Do you ever ask yourself “where will I be in 5 years”? I don’t anymore because it is too terrible to contemplate.
Great point, Lisa.
Re: Question 2
I think the RA Foundation should put commercials on T.V. that are as horrifying as the auto accident commercials. The auto accident commercials show people have a nice family time driving down the rode and then all of a sudden there is a major collision. It is horrifying and startling but it is what an accident is like. The RA commercial would have few words but be very visual. It would show a hammer hitting somebody’s hand (no blood) It would show a hammer hitting somebody’s knees etc, etc… And then, at the end of the commercial it would show a REAL PERSON who is crippled with RA simply saying, this is what RA feels like. We need a cure.
Tanya, I like your ideas, but there is no RA Foundation in the US. UK has NRAS. Maybe that is where we need to start.
when I was first diagnosed, I contacted the NRAS to ask about support here in the US. They were surprisingly prompt in answering my email, and extremely helpful. The trouble is, all their support people are in the UK and the information at times is only relevant in their context (their disability laws are different than ours, and they have socialized medicine). But I wonder what it would take to partner with them? Perhaps a U.S. extension or “sister organization” of some kind. Sharing resources is so much better than re-creating the entire wheel, since in itself that kind of cooperation broadens the entire base of support. As I google about the ‘net, it seems there are bits’n peices out there but no one US organization seems to have it all packaged as nicely and as comprehensively as the NRAS.
Good points. Susan, I have thought the same thing.
Kelly, I’d like to thank you (and all of the wonderful people who contribute through their comments and viewpoints) for this incredible blog, the information you provide, the eyes you open, and the hope you bring. You have truly outdone yourself in the fight to educate others about this devastating disease which is RA.
I found this site a week ago, and have been glued to my chair for much of that time, reading all of the posts, stories, and viewing the videos. It’s an incredible feeling to find others who share every aspect of my disease, and who face the same difficulties and limitations. Finally, after more than 5 years of living with RA, I don’t feel so all alone.
In keeping with the topic of RA awareness, I wanted to tell you that in the area in which I live, there are no support groups for people suffering RA, OA, or any of the other rheumatological conditions. Our hospital does not provide a pool for aqua-therapy, nor does our YMCA include a pool for swimming or AF exercising. To access these facilities, one must travel to a neighboring county. No one with RA should be made to endure long hours in a car for the benefits that aqua-therapy provides.
Just yesterday, while speaking with my mental health counselor (aside from the RA, OA, and fibro, I also have bipolar disorder) I stressed to her my frustrations at dealing with several difficult diseases while having no support groups or water programs to which I may turn. I expressed that I cannot be the only person in this area suffering from these diseases, and who would benefit from these programs.
She suggested that I research the “hows” of starting a support group, find educators who could speak, research the funding and rules required for a pool to be built, etc. While I am not quite that brave or educated, I did tell her that I would stand behind anyone who may be able to start the ball rolling in these areas. She then promised to speak with our hospital’s director, and to help find ways to make this happen.
You may find it interesting to note that our hospital provides support for those who suffer urinary incontinence (as I do, but I don’t know that it’s connected to the RA)yet there is nothing concerning arthritis awareness. Hopefully, through my wonderful counselor, the confidence and education your blog provides, and others who suffer this disease, the people in my area will have a place in which they will find fellowship, education, and hope.
My most sincere gratitude for the work you have done in this fight against RA.
~Amy
Dear Amy, Please read over the page on the menu called Local RA Support and the comments there. If there is not a group near you, maybe you will want to email me (kelly@ rawarrior.com) and I can put you touch with someone who can help you start a group there – there is an org that does that all the time. What do you think?
Hi Amy,
Welcome to RA warrior community. I couldn’t believe it when I read your post that you have bi-polar d/o as well. I’ve been trying to find anyone with the combo of RA and bipolar for quite some time now. I find tremendous support from RA’ers here, but I’ve always wanted to find others who suffer from multiple conditions – as I feel it’s really it’s own disease. You have the yo yo effects of bipolar AND the yo yo of RA. They just sort of feed each other, and it’s something that most people can’t understand (especially since most don’t even understand either one by themselves). I would love to friend you on facebook or message you through email if you’re comfortable with that. You are the 1’st person I’ve come across with the same two major illnesses that I have, and I don’t think there are many of us. If you get this reply, my FB profile is: http://www.facebook.com/Bubbajr60….I’d love to hear from you. Good luck with everything, and I hope you’re feeling better after finding this site, I know it’s been a huge comfort for me
Well Genentech owns the http://www.rheumatoidarthritis.com domain and they have some good info on there. They make ACTEMRA and Rituxan. Perhaps they might want to get involved in or sponsor an awareness campaign.
Hi Kelly,
This link below shows the kind of thing I mean about merchandising. Clear, simple and easily recognisable but also can be varied with different slogans etc (I’m not good at slogans so excuse my examples.
Perhaps the logo of a partner somewhere too. Would google themselves point people to a particular site if they were asked to be involved.
By the way the shirt design is based on the way sportsmen and women often have their initials on training gear.. don’t know if they do that in US but it’s common in Europe.
This is simply a web space I don’t use and I didn’t bother designing so it just the examples.
http://www.markseven.pwp.blueyonder.co.uk/
regards
Mark
Those look like nice shirts though. Google would if they were paid to. That is called “sponsored” sites.
Also my site does appear in lots of searches – if someone is searching.
I do have some t-shirts now – would you like me to try to do something with those?
I’m not sure about the shirt thing Kelly. It was just an example of the type of thing that may get some attention.
The difficult bit is building a group and a planned deluge of information that can’t be ignored.
You already seem to be the global leader in ‘real RA awareness’ so it’s a very good starting point indeed.
I don’t have RA (officially) but have become a reluctant e-patient if that’s the correct definition for a person trying to find out what is wrong. Despite this I have been astonished by many things I have read and will give up time for your plight if it helps.
Mark
Mark, that’s what I have been too. Have you read my story here on e-patients.net? We didn’t ask to get sick, but we have to do something about getting treated. I hope you can get your dx answer soon.
First, Kelly, thank you for your devotion, your commitment, your determination, and the platform that you created and so graciously share with all of us who suffer from RA. I used to say I “had” RA but the reality is that we all suffer with this pervasive and elusive disease.
I love the idea of changing the name. I think RAID (Rheumatoid Auto Immune Disease) is pretty appropriate since this disease hits like a band of thieves that beat you up and rob you of what you value most – our mobility, our health, and our independence. Just imagine, a whole new campaign: Don’t let RAID rob you of your life – it’s time to find a cure!
I also think that the “arthritis” tag is what distracts people from realizing the truth behind this disease. We need more visibility, more people to speak up, more people to OWN this disease and yes, I know that that last one is hard. None of us WANT this destructive and despicable disease but as long as we hide it, society will not learn about it and it is going to take increased societal awareness to make a change for all of us. We have to OWN this disease to get RID of it. Otherwise, we are just ostriches hiding our heads and hoping it will go away. It won’t but we can fight it and the more people we have behind, the better our chances are of winning this battle.
Thank you again and healing wishes to everyone.
Mary
Very good points, Mary. I’m hoping I can point people to come read these comments again. Wow.
Kelly,
I am so tired of this epidemic of ignorance that not only affects the media but the medical field!
About two years ago I had a very similar experience to your “Dr. Space Heater” story. I am not shocked, but sadden by the fact that many of us are so frustrated and often times left without hope or help when dealing with RA (that is until we find our way to your blog!!)
At the age of 35 RA took my life, my marriage, my ability to have children (for now), my livelihood, my independence, my freedom, my body (which is now 60 lbs heavier) and so much more…….. BUT IT WILL NEVER TAKE MY SPIRIT! GAME ON!
I found out that Bristol-Meyers Squibb, the pharmaceutical company for ORENCIA is currently sponsoring “Let’s talk RA” Town Hall meetings in many different cities and states around the U.S. There are a few meetings on U-tube as well if anyone is interested – just search “Let’s talk RA Town Hall Meeting”. I signed up to be at the meeting in Columbus, Ohio and just ordered my free “Let’s talk RA” kit. If anyone knows anything about these meeting please let me know. If it’s a scam please clue me in before I waste my time. I want to go and see if I can participate in the “discussion”.
Kelly – I WANT you to be the one in “the chair”. I think we should focus on HOW ONE OF US CAN GET INTO THAT SEAT. Talk about a about a sleeper cell – no pun intended!
In regards to a protest or petition – Ironically I met a political attorney this past Thursday. I am going to give him a call to get his ideas on what we can do to really be heard in Washington. I will let you know as soon as he gives me some insight.
Many Blessing
Mel
Well said, Mel. Tired of ignorance indeed.
No, I wouldn’t call it a scam… The “town halls” are a joint project with a pharma company and the AF. I’ve been asked by them to promote them but I didn’t. I do not see how the events will help us in the long run although it certainly would feel good to patients to have a chance say their piece. Honestly, I think that’s what we are doing here with blogging (saying our piece) – and it sounded like they would rather we did it there.
I don’t recall which pharm co was sponsoring it, but what was that new online RA show? New Way RA? The one that Sara signed on for? Anyway, I saw a TV Ad for that. It was more moving than any current RA ad. They had a middle aged older lady sitting in a chair on stage. She had very deformed fingers. Pretty much just stating it doesn’t need to be this way. And showing audience members holding back tears. Didn’t mention a specific medication. However, it still didn’t seem to be enough. Still makes everyone think it’s just a disease of the hands. I haven’t seen the commercial since, so not sure how often it’s run or on how many stations.
I think we need more blogging docs like this one (and in the office too really!) http://thedoctorsrheum.wordpress.com/2010/08/15/dr-fix-it/
When all the docs have this level of awareness something will happen.
Eileen, I know several docs who interact with me and this site and even promote my writing by re-posting links to it and also have me write guest posts on their blogs. It is helping to raise awareness one doc at a time especially since some of them are not rheum docs, but it is a slow process. Its a very good point how social media will be part of the answer. There is a kind of democracy to it.
Kelly,
I gave my doctor and her nurse the information for your blog about 3 months ago. The nurse (whom I love) said she is giving it out to patients that are struggling with RA. You are making a difference one person at a time.
I will keep thinking of ideas.
Mel
Omygosh, that’s great. Thanks so much for tellling me!
This topic came up to late for me to implement this year but I have started getting ready for next year. I live in a small town but our county fair is huge. Second only to the state fair. I am renting a booth next year to help educate about RA. I am ” stealing” several ideas from my fellow warrior. The gardening tools, 1 rusted, 1 eaten with acid. I am making a big poster of your things not to say and also how to help. Got to start thinking about getting ribbons, and maybe some of your merchandise to pass out/ and or sell ( have to check the laws on that one.) Keep the ideas coming for me to steal.
Dear Tanya, let me know when it’s time & I’ll see if I can help. Maybe I can make something for you to have printed…
I have started translating some medical terms in marathi.Below is the sample. I am still doubtful if it can be read as it is.Pls inform me about its readability in marathi. So that I shall continue my further work. I request your suggestions please.
synus—————-अस्थि पोकळी
Osteopetrosis—– अस्थि काठिण्य
Osteoporosis, Osteomalasis——-अस्थि म्रुदूता
Caries —————अस्थिक्षय
Osteoarthritis——-अस्थिसन्धि शोथ, सान्ध्यामध्ये सूज येणे
Osteomylitis ——–अस्थिमगज दाह, हाडांच्या पोकळीतील मगजाला सूज येणे
Ostalgia————–अस्थिवेदना
Osteodynia———-अस्थिशोष, हाडे वाळ्णे,सुकणे,क्षीण होणे
As a long time person with Rheumatoid Auto Disease, I feel cheated! We are those who have been left out of society and not reconginzed. Peopl.e look at us and say you don’t look sick…awarness is what we need and we need to all band together to get the word out and to CHange the NAme…
I pefer Rheumatoid Auto Diease…
Thanks, Betty. I agree getting together will make a difference.
Thank you Kelly for helping start this battle cry, I myself have also had it for a long time now, but its always nice to know I’m not alone in my cries and pleas! I was 9 when i was diagnosed with JRA and then 14 when i was re-diagnosed with MCTD (RA, SLE, Sjogrens, Raynauds, Vasculitis & Polymyositis) Im now 34. I’ve fought this my entire life, so much so I dont recall ever NOT having it. I’m sick of the misconceptions from EVERYONE around me, the lack of knowlege and the lack of support by anyone! I try to educate everyone I meet. I’m mad and I’m screaming louder now….We desperately need to rally together and get support & awareness out there so the next generation doesnt have to go through all the termoil we did at the very least. Thank youfor helping get this out in the open!
:heart: thank you Jennifer. We can do this together. We just won’t quit. Like you said, we can’t. This is our lives we are fighting with & for.
Hello all! I’m the one who started the emailing campaign to Yoplait yogurt! If you’d like to help with this, read on:
Now that we’re all seeing the pink lids on our Yoplait yogurt containers, I decided I would voice what always comes across my mind – why not Arthritis? I think we deserve a month of the year with some blue lids, to benefit Arthritis Foundation research. After posting this on the RA Warrior Facebook Wall, I discovered that many others felt the same way! Thanks to Carol for helping me find the website!
http://www.yoplait.com/
Click on ‘Contact Us’ and give them a polite piece of your mind. Below is the text of what I said to them. Feel free to copy and paste or create your own message. Maybe if they hear from enough of us, it’ll have an impact! 😀
“Every year I avidly participate in your ‘Save Lids to Save Lives’ Campaign, and I feel that it is a wonderful cause – kuddos to you for making such a difference! I have always been a fan of Yoplait yogurt and I am proud of your committment to helping others.
On this note, as one of the 46 million Americans with doctor diagnosed arthritis, I implore you to continue the ‘Save Lids’ campaign to help those with this chronic disease as well. Perhaps you could set aside another month of the year, with some blue lids appropriate to the cause, that could help raise money for the Arthritis Foundation to continue its research. Arthritis is the nation’s number one cause of disability among Americans over the age of 15. It is truly a painful and crippling disease that affects adults as well as about 300,000 American children. It can also be a deadly disease, especially among those with Rheumatoid Arthritis, who have to deal with complications from arthritis (such as heart conditions).
I strongly feel that the Yoplait name could help to raise awareness and funds for this very important cause. Thank you so much for your consideration of this matter.”
As I was reading some of the comments from newly diagnosed RA patients, the isolation and fear from our own lack of awareness and correct information is what is most alarming to me. We are told by our doctors that we have this disease that we know nothing about, then left with “Call the office if you have any questions.” We don’t even know what questions to ask for Heaven sake!! I know how I felt when one early morning recently,I stumbled onto RA Warrior. The joy at knowing I was not alone was immeasurable! Why are our rheumatalogists not giving this web site address to new patients? Awareness should start with us! This site gives us the much needed information to first, become informed ourselves. Then again, with this web site’s help,we can begin the difficult task of informing family & friends. Sometimes a long journey must begin with small steps. Come on Doctors, help us to help ourselves. Perhaps we should give them the address, in case they are unaware.
Thanks Kelly, for the links!
Just passing through…
And I saw your picture and just wanted to tell you… ‘Hey, you’re cute!’.
So there you go. Said it…
Great discussion all! This has been on my mind as well, and is a very important topic. I have dealt with this my entire life as well as I was diagnosed with JRA at age two. To this day, I deal with lack of understanding from 99% of the people I meet including those in my own family. We have to acknowledge one important thing- without a direct experience of this complicated, painful, confusing, messy predicament called rheumatoid arthritis, it is very, very hard if not impossible to understand just how difficult it is. We never get a break from our pain but the people around us can and sometimes they need it.
That being said, you are absolutely right, knowledge and media coverage of this disease is atrocious. I think that the best thing we can do is become more visible. Show up at health fairs, write to influencers, take time to share your experience on social media platforms, letters to the editor, and show up at arthritis events. I know from my own experience that it is draining to always educate people and given the limited energy we all deal with, sometimes I just shut down instead of being vocal when I’m confronted with mis-understanding. But at this point in my life I recognize that it is up to me, and people like me, to show up on behalf of myself and my fellow warriors and do my part with whatever energy I can come up with. Thanks so much for all you do and for writing about this important issue.