What Would Rheumatoid Awareness Mean to You?
What difference do you think it would make if it Rheumatoid Disease were recognized for what it is by everyone – the general public, media and marketers, pharmaceutical companies, U.S. National Institutes of Health, the Centers for Disease Control and Prevention, the American College of Rheumatology, all healthcare professionals, your neighbors and your family…?
Rheumatoid Awareness Day, February 2nd, is a day of recognition of the reality that Rheumatoid Disease (RD) is a progressive inflammatory disease in need of greater research and improved treatments. RD causes damage to joint and organ tissues, resulting in severe pain, frequent disability, and increased mortality. Rheumatoid Awareness Day helps combat the misconception that Rheumatoid Disease is a form of arthritis. While joint inflammation is a prominent symptom of this disease for most patients, it’s a disservice to refer to RD as merely a type of arthritis. Patients in our community have often experienced systemic effects of the disease that confirm what research tells us. So…
- More research dollars?
- Earlier medical treatment?
- More appropriate accommodation?
WHAT WOULD RHEUMATOID DISEASE AWARENESS MEAN TO YOU?
Tell the world your answer
- Share your answer in the comments box.
- Share this blog post on social media, along with your answer.
- Email this post to a friend, adding your comment (button below).
- Write a blog post about WHAT RHEUMATOID AWARENESS WOULD MEAN on your own blog.
#Rheum Blog Carnival
If you have a blog of any kind, you are invited to write a brief post to answer the question What Would Rheumatoid Awareness Mean? Put a link to this post in your blog post, and add a comment below to tell others about your blog. Patients and their families, caregivers, as well as industry and healthcare professionals are welcome to participate. I hope we hear a variety of voices in honor of Rheumatoid Awareness Day. On January 31, I’ll post summaries of all the blog posts, with links so you can visit them all.
Participate in Rheumatoid Awareness Day 2014
Click here for a list of 2014 Rheumatoid Awareness Day events on rheum4us.org. In 2013, people held local gatherings and fundraisers. Tens of thousands participated in live online events on social media. Others contacted local media or public officials for proclamations of Rheumatoid Awareness Day – click here for one story. Many donated to the Rheumatoid Patient Foundation (RPF). This year will bring another special matching grant for RPF donations, so you can contribute to that now if you’d like. If you do, I encourage you to share that with others too, since it might inspire them to get involved.
More!
- Help spread awareness with a PBS NewsHour Twitter chat Thursday January 16 at 1pm EDT; I’ll be guest co-hosting. The hashtag to follow is #NewsHourChats.
- Get t-shirts or mugs, etc. to help spread awareness.
- Click to be counted by joining the Facebook event for Rheumatoid Awareness Day.
- Please feel free to save the images and use them in social media or your own website. There are other images available on rheum4us.org – click here.
MORE TO COME!
Recommended reading
- 10 Common Rheumatoid Arthritis Myths
- Awareness Ribbon for Rheumatoid Arthritis, Finally
- 1st Rheumatoid Disease Awareness Day – Groundhog Day 2013
- The Invisible World of Rheumatoid Arthritis Speaks
I also am afflicted. Where can I get this ribbon to add to my blig?
Marilyn, you can right-click on any of the images here>> http://rheum4us.org/rheumatoid-arthritis-resources/rheumatoid-awareness-images/
and then save to your computer and use on your blog.
I got so excited about RA awareness I wrote another blog post based on what my support group friends were saying
http://yourgoldwatch.blogspot.ca/2014/02/a-day-in-life.html
It’s nice to have a solid group of friends who understand what it’s like to deal with RA/RD and they often have good answers to problems that are new to me
I thought I had posted this pingback, but I guess not! I did post!
http://turtlemom2.wordpress.com/2014/01/21/a-world-aware-of-rd/
Cheerio!
Elizabeth AKA Turtlemom
Rheumatoid Awareness in my mind would surely motivate pharmaceutical research in medication that is far less debilitating, poisoning and consider making something more effective. Come on, please. I am in pain but I’m terrified of the drugs offered. I feel if I take one of the current offerings I feel I will be giving myself a death sentence. I guess I still am if I try to ignore the pain and damage I will suffer with this disease. It’s a shame, we shouldn’t have to live with this. But it does make money, doesn’t it. Maybe that’s the tragedy of it all.
Have started calling it RAD Rheumatoid Auto Immune disease and some of the younger clinicians/OT’s etc. accepting this well. Good idea Kelly !
Having some serious problems with Methotrexate and had to stop and am awaiting approval for Orencia.
Found a product called SAM-e methanione at health food shop. It is on the low cost system in Spain, Italy, Germany, France for Arthritis. Works real well on CRP + ESR lowest in 20 years. Costs $65 a month in Australia only problem.
Anyone else tried I’d like to know email me at amrak1@optusnet.com.au (if that’s OK with you Kelly)
What Rheumatoid Awareness would mean to me:
Not constantly having to explain that I can’t ‘use it or lose it’!! or that I look fine today so must be exaggerating on other days when I can’t move. I’m not being judgemental – this could have been me before I had it, sadly.
Not being given a load of unsolicited advice on various quack cures, juices, magnetic splints etc., etc.; You would not do this with any other life changing, debilitating serious illness with no cure.
I live in the UK where it is constantly and regularly confused with (osteo)-arthritis (I am not down-playing this condition, my poor old dad has had 2 hip replacements) but it is not the same.
I am so behind your mission to change its name to Rheumatoid Auto-immune Disease, partly because of all the other symptoms that no one knows about: fatigue, scary breathlessness especially (I have even had rheumatology tell me this isn’t typical)and the fact in can affect other tissue and organs. It is not just a disease of the joints and all the other symptoms go unrecognised.
I wish more publicity were given to it, more people were aware of it and funding for research into its causes were more readily available. Good luck in raising its profile further: I am so grateful to you and your website for your stellar efforts so far.