The American College Of Rheumatology Is Accepting Applications For “Advocates For Arthritis”

Advocates for Arthritis, the ACR’s Annual Capitol Hill fly-in, brings rheumatology professionals and patients to Washington D.C. to advocate on behalf of the rheumatology community. During this event, participants meet with their members of Congress and staff to discuss current legislative issues affecting the rheumatology community. Attendees will also hear from top representatives from key legislative and regulatory agencies. Advocates for Arthritis is a great way for ACR and ARHP members to engage in the legislative process and increase awareness of rheumatology on Capitol Hill.

Applications are now being accepted. Don’t miss this opportunity to educate Congress on the impact arthritis and rheumatic diseases have on one’s quality of life and the importance of care provided by a rheumatology professional.

More Info: http://www.rheumatology.org/advocacy/advocates.asp

American College Of RheumatologyThe American College of Rheumatology’s mission is advancing rheumatology. The organization is for physicians, health professionals, and scientists that meets the mission through programs of education, research, advocacy and practice support.

The ACR provides professional education for its members through several venues. The Annual Scientific Meeting, held each fall, is the premier scientific meeting devoted to the rheumatic diseases. This meeting draws thousands of rheumatologists and arthritis health professionals from around the world. A winter rheumatology symposium, spring clinical meetings, and other topical conferences round out the ACR’s educational offerings.

The ACR publishes Arthritis & Rheumatism, the premier scientific journal for research in the rheumatic diseases. Arthritis Care & Research is published by the Association of Rheumatology Health Professionals, a division of the ACR. This journal focuses on the health services and clinical aspects of rheumatology.

More Info: http://www.rheumatology.org/

0 Comments

NYU Langone Rheumatologists Share Insight With Online RA Community

Experts Offer Updates On Research and Treatments for Rheumatoid Arthritis with Leading Online Community Advocates

June 10, 2011 – Steven Abramson, MD, professor of medicine and director of the rheumatology division at NYU Langone Medical Center, hosted a webinar with colleagues from the medical center for rheumatoid arthritis community bloggers – bringing together, bench, bedside and the blogosphere to discuss advances in the investigation, care, and treatment of RA. The webinar can be viewed here.

“Although we have made significant advances in the treatment of RA, many people continue to have significant symptoms. Today people with RA use the Internet as a resource to stay informed and support each other – and this was a good forum to discuss advances in arthritis research here at NYU Langone with a group that not only deals with the challenges of RA – but are vocal advocates for themselves and others,” said Dr Abramson. “It’s important that information about treatments and research be shared and disseminated from appropriate and reliable sources.”

Read More: http://communications.med.nyu.edu/news/2011/…

coe_individual_logo

The Center of Excellence on Musculoskeletal Disease builds on the expertise of the NYU School of Medicine and NYU Hospital for Joint Diseases to focus on leading-edge research in arthritis, autoimmunity, and the repair and regeneration of musculoskeletal tissues.

The mission of the Center is to conduct world-class research that contributes to the understanding, treatment, cure, and prevention of musculoskeletal disease and thereby provides patients access to promising new treatments for the full spectrum of these conditions. Toward this end, we:

  • Conduct collaborative studies that examine the basic biology of joint tissues and their functional decline with age;
  • Develop methods to promote the regeneration of joint tissues;
  • Lead efforts to undersand the basic mechanisms of tissue injury in systemic lupus erythematosus and bring novel therapies to the clinic; and
  • Apply bioengineering to design more effective implants to replace defective or injured bone and cartilage.

By bringing together our most outstanding basic scientists and clinical researchers, we are able to conduct highly collaborative, multidisciplinary investigations that inspire new ideas and discoveries and that have the potential to translate scientific advances more swiftly into new ways of treating patients as well as diagnosing and preventing musculoskeletal disease.

More Info: http://coe.musculoskeletaldisease.med.nyu.edu/

1 Comment

Doc’s Arthritis Struggle Shows Illness’ Severity

WASHINGTON – Dr. Sue Zieman can almost set her watch by her disease: Twice a day, she gets a fever and the already arthritic joints in her arms and hands, legs and feet abruptly, painfully swell even more. During the evening flare, even the tendons in her feet puff up, rope-like worms just under her skin.

The rest of the day, her joints are so stiff that the once robust Maryland physician frequently uses a scooter to get around. Just shaking hands hurts the 47-year-old.

Inflammatory arthritis is disabling Zieman but exactly what kind and what caused it to attack suddenly is a mystery. Nor do her fellow doctors know what treatment to suggest next. She’s tried all of today’s arthritis medications with little relief.

Say arthritis, and people tend to shrug it off as a rite of passage of aging. The reality is much more complicated. Arthritis encompasses 100 different conditions and affects about 46 million people in the U.S.

Read More: http://news.yahoo.com/s/ap/20110614/ap_on_he_me/us_med_healthbeat_arthritis_mystery

Thanks to Carol for the hat-tip!

0 Comments

Fighting Rheumatoid

Fighting Rheumatoidby Gemma K. Nicholls

I was diagnosed with the chronic disease Rheumatoid Arthritis at the age of sixteen. I was a young, fit and healthy teenage girl before I got diagnosed, I had the world at my feet. My world was blown apart when i got diagnosed with Rheumatoid. I had to stop doing everything that I loved, I had to grow up sooner than I should have. Lost my confidence and my self esteem. I had to let go of the person I was before I got diagnosed. I had to adapt to a new life and a whole new way of thinking. My book talks about the truth about the awful disease Rheumatoid. To help a lot of people who has been newly diagnosed with the illness. What emotions you go through, the truth about what happens to your body. What to expect.

More Info: Fighting Rheumatoid (Amazon.com)

0 Comments

In Memory Of RA Superbitch

Superbitch.jpgA couple of years ago, a breath of fresh air entered the RA blogging community. Even though we emailed many times (how I loved all of the questions she always asked me), I don’t think I ever got to know her real name. Like myself, she wrote under a pseudonym. Many of us knew her solely as RA Suberbitch. I always looked forward to her blog posts, which usually cut to the chase, eliminated the niceties, and put a voice to our thoughts.

It was with much sadness that I received news earlier today that RA Superbitch passed away last week. (I have no direct information beyond what is available on her Facebook fan page.)

RA Superbitch, you will be missed.

Tabby Callon:

“I am so sorry to post that the RA Superbitch passed away this morning. She was peaceful at home with her husband and son. I know that she would want you to know. This site, her blog, and her RA friends on each of those have helped her in so many ways throughout the years. You were able to understand a side of her & support her in a way that her real life friends were unable to. I don’t know how much detail her husband would really like me to post on here. I will check with him in a few days and repost any info that he would like me to. Please keep her family in your prayers.”

June 4, 2011.

Blog: http://rasuperbitch.blogspot.com/

Facebook Memorial Page: http://www.facebook.com/pages/RA-Super…

Updated 4:05pm to include RA Superbitch’s 1st Blog Post.

“She is Frequently Kind, and then Suddenly Cruel.”
November 14, 2009

So I have rheumatoid arthritis…yeah, it pretty much is horrible. When people can’t understand why I’m having a bad day, I often say, “Hey – here is an idea…Why don’t you… try smashing a brick into your wrist? Oh? That hurts? Well, too bad; you’re just getting started. You’ll have to smash that same brick into your other wrist, of course, but then also each knee, each hip, all ten fingers, all ten toes, your shoulders if you can still lift anything at this point, your elbows, and finally, your jaw…yeah, both sides. When you are all down with that, come back and tell me how you feel, but try to stay positive! No one likes a whiner! You know, you can affect how you feel by how you envision the pain! It is really all in your mind!”

Sound psychotic?

Of course it does. Yet, we that live each day with a disease called RA (short for rheumatoid arthritis) are asked to do pretty much the same thing on a DAILY basis. Not only that, but many of us would have learned to jump up after the brick incident and go to work or play with our kids or make dinner. And dare we complain for one second, any number of people would accuse us of “feeling sorry for ourselves.” Gasp!

As one can imagine, there are MANY times during the day that I want to tell these people to go jump in a lake. In fact, there are SOOOO many things I want to say about this disease and about the public’s attitude towards it…but I don’t. Like most of you, I was brought up to be polite. And I care too much what others think. God forbid I be grouped into the “whiney” category. And I also know that if people think you’re not helping yourself, they will not help you. This is ultimately very important because if you have RA, you will find yourself having to do things to survive you would never have begun to believe before you were sick, and one of those things is to let people say crazy, hurtful things based entirely on their ignorance about your own horrible disease. You let them impart their “wisdom” so that you can make them feel better about watching your kids when you have an appointment, or giving you a job, or even picking up the tab so you can continue to send all your money to the insurance company.

But I’m so so tired of keeping my mouth shut. It is who I AM in my real life, the woman with the brave face and enough optimism to keep everyone smiling when I’m limping, the consummate cheerleader, Rebecca of Sunnybrook Farms, Suzy Sunshine… and let me tell ya, it is sickening to my alter-ego.

And here she is – my alter-ego. I have brought her out for purposes of this blog. She is mean. She is cranky. She should be; she deals with constant pain and limitations. She gets told “no” a lot. She swallows over twenty pills a day, and is pushed around by her family, strangers, insurance companies, co-workers and even doctors who think she should accept her reality. And now, she is fed up with the hand she’s been dealt. She has “snapped,” so to speak. She is about to say what she’s thinking about this messed-up disease and she will take no prisoners! She is going to let it all out without fear of consequences. She is going to make people angry and then sit back and smile that she did. She will say it like it is so that the rest of us can hear it. She is essentially Gabby Solis from Desperate Housewives with an auto-immune disorder, and she is ready to blog.

RA Guy says we are super-heroes if we are all living with rheumatoid arthritis. He couldn’t be more right. So by day I’ll continue to be an RA superhero. I will raise my family and do my job, and send money to the arthritis foundation and educate myself and my doctors about my condition… but online I will be a rip-roaring, you can’t stop me from saying it, true to my word- Bitch!

So part superhero and part bitch. That makes me a superbitch.

I AM an RA Superbitch, and this is my blog. Enjoy.

Read More: http://rasuperbitch.blogspot.com/2009/11/she-is-frequently-kind-and-then.html

RA (Maybe) Mamma
Thoughts & Prayers for RA Superbitch’s Family

Pain, Pain, Go Away
Rest In Peace

The Single Gal’s Guide To Rheumatoid Arthritis
Paying My Respects

∞ itis
RIP

Remicade Dream
RA Superbitch

Not Standing Still’s Disease
RA Superbitch

Updated June 21, 2010

Tabby Callon:

“Many have asked about the cause of her death. She had a procedure done (not related to her RA) around two weeks before her passing. She felt tired & a lil off the morning that she passed away so she laid down to take a rest. When her husband checked on her, she was gone. The dr’s believed it was a complication due to the procedure she had done.

I hope that each of you have been doing well. I am sorry it has taken me a bit of time since my initial posting until now. Needless to say, it’s been a rough time for many of us (esp her family) since her passing. Her husband has been reading through your posts & each of your kind words have touched him. It is nice to see what a positive impact The RA Superbitch made to so many others. She is now free from pain & the daily struggles that she faced. She is now an angel that will be looking over each of us.”

12 Comments