During president-elect Barak Obama’s 30 minute special that ran the week before the election on multiple national TV networks, he highlighted the struggle that Larry and Juanita Stuart of Ohio face on a daily basis: Juanita has rheumatoid arthritis and their mounting health care bills have forced Larry out of retirement that he had worked so hard to earn.
I have empathy for Larry and Juanita Stuart’s struggle, and I also have deep gratitude for their willingness to share their story. Rarely is the topic of any form arthritis brought to light in such a grand scale. I hope that it helps to raise awareness.
If you have trouble viewing the embedded video below, click here .
Forward the video to 7 1/2 minutes to see the segment on rheumatoid arthritis.
Ever thought of going to a Halloween shindig as “arthritis?” With a suit that was recently developed by Loughborough University, now you can. The suit is more of an eye-opener for the person wearing it, though. People who encounter someone dressed up as “arthritis,” wearing a mostly black, with white and red “accents” jumpsuit might think you are a skydiver or a motorcross racer.
The concept behind this funny-looking suit is that it gives others insight into what life is like as an osteoarthritis patient. Whoever is wearing the suit will find it hard to bend down to pick things up, open jars or climb stairs, among other things.
What a great idea. These suits should be featured at all arthritis events (walks, conferences, support group meetings) so friends and family members can walk in our shoes for a few minutes. Doctors could even try it for a day to better understand what their patients are going through.
Now, if only someone could invent a super suit that reversed the effects of arthritis! I’m waiting for that day. And that suit better be pretty stylish.
But this got me thinking, if you did go to a Halloween party as “arthritis” what would that look like? Leave your ideas in the comments!
The New York Times recently ran a piece discussing chameleon-like qualities of Sjögren’s syndrome. I learned a lot from this article and wanted to highlight it here to raise awareness.
Sjögren’s symptoms often suggest a variety of other diseases, and doctor’s simply miss it. But things are changing.
No longer listed in the National Organization for Rare Disorders registry, Sjögren’s is now considered the second-most common autoimmune disease, right behind rheumatoid arthritis. On average, though, it takes six years to obtain a diagnosis. In that time, vital organs can be damaged. That right there is reason enough to highlight this tricky disease. I encourage you to read the full article here to learn more.
Hello loyal readers and new friends! I greet you with great news from the Arthritis Foundation:
The unbelievable and miraculous has occurred – we have just gotten word that the US House of Representatives has scheduled a vote expected tomorrow, Thursday on the House floor on HR 1283, the Arthritis Prevention, Control and Cure Act. Thanks to all of you for your hard work these past 5 years, but your work is not yet done. We need to make sure that if a recorded vote is requested and taken on this bill that 2/3 of the Members of the US House of Representatives vote YES. Being a co-sponsor of the arthritis bill does not guarantee a Member of Congress will vote YES when it reaches the floor, nor does a non-co-sponsor indicate he or she will vote against it. For those of you with Members of Congress who have not co-sponsored but have indicated they would vote yes when it reaches the House floor, now is their chance to support the bill.
PLEASE CALL YOUR REPRESENTATIVE ON THURSDAY MORNING OR AS SOON AS POSSIBLE AND ASK THEM TO VOTE YES ON HR 1283, the Arthritis Act. Offices will be open from 8:30 am- 6:00 PM EST. We need all of you to please call the Capitol switchboard at (202-225-3121) or call your Member directly and ask him/her to VOTE YES tomorrow on the Arthritis bill, HR 1283.
This is truly exciting news and we will keep you informed as the day progresses.
This link will prompt you for your zip code so you can easily determine who your representative is. You’ll also receive contact info for your rep. I’ll be calling first thing in the morning! Who’s with me?! Let’s DO this!
For more information on the Arthritis Prevention, Control and Cure Act, click here.
The Lupus Foundation of America enlisted the celebritydom of Donald Faison and Sarah Chalke from NBC’s ABC’s Scrub’s cast to create a few great PSAs designed to raise awareness about the disease. This got me thinking. I would love to see some celeb PSAs for Rheumatoid Arthritis, Fibromyalgia, Juvenile Idiopathic Arthritis, Scleoderma … how much time do you have? This list could go on for a while. I would also love to see a PSA that takes a crack at educating the public about what it means to have an “invisible” disease like arthritis. A little understanding could go a long way. And maybe sometime in the near future we won’t have to do a fake limp into the mall after parking in a handicap space with our placard.
Which disease would your fantasy PSA focus on and and what would you like to see it communicate to the public? Leave your thoughts in the comments.