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/

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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/…

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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/

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Lene Andersen

Lene Andersen

Real Profiles of Rheumatoid Arthritis
Real Profile Andersen Lene
Photos © Lene Andersen

Name?

Lene Andersen

Age?

48

Location?

Toronto, Canada

How long have you lived with RA?

43 years (since 1968 when I was 4 years old).

What advice would you give to someone who has just been diagnosed with RA?

Take control of your medical care, remember that it’s your body and your life and find a rheumatologist who’ll be a team player, understand that you’re in charge and that their job is to provide you with the information you need to make sound decisions. Get counseling – cognitive therapy can be especially helpful in terms of giving you coping skills. Don’t be afraid of your meds, they’re tools to help you get back to living. Live your life, remember that the RA is part of what you are, not who you are.

Do you use any mobility aids?

Power wheelchair since I was 16 (1979), currently on chair #4, a snazzy electric blue number. Have previously used splints, crutches, manual wheelchair for travelling, etc.

How has living with RA helped to improve your life?

Living with the ups and downs of RA for over 40 years has taught me resilience and a rather stubborn belief that I can do anything if I put my mind to it – when you know that pain isn’t the worst thing that can happen, your options expand. RA has taught me perspective and the ability to see the joy and beauty in the small moments – when you move a little slower, you notice things that others might not. And in a strange way, RA has taught me hope. With the perspective of over four decades of living in an uneasy partnership with this disease, I know that RA ebbs and flows, that good times can be followed by not-so-good times and that bad times – so far (knock wood) – are followed by good. The bad times still aren’t fun (understatement of the century there), but I have evidence in my own life that if you stick it through and fight hard, the good times come again, sometimes better than they ever were before.

Do you have any visible signs of RA?

All joints have deformities and limited mobility, some fused, surgery scars from synovectomies right wrist (age 10) and left knee (age 16), both resulting in fused joints and scars from both hips being replaced (age 16 and 17).

Can you please describe some of your favorite coping strategies for living with RA?

I’ve found mindfulness can be very helpful, as well as remembering to be grateful to my body for getting me through the day despite some pretty intense challenges. Developing filters so I can ignore the pain and get on with my life (denial ain’t just a river in Egypt!). Good books, good talks with friends, having the occasional hissy fit and then getting back up on the horse that threw me, being in nature helps calm and centre me. Writing – angst- ridden or not – and photography. Anything that takes me out of the dark place, shows me something beautiful or makes me laugh.

Can you please describe your current medical (traditional and alternative) treatments?

Current meds: Humira, Tylenol #2, Tylenol Extra Strength, Flexeril , codeine as needed, steroid injections. Have previously been on Enbrel, methotrexate, Paquinil, gold, every anti-inflammatory known to the human race, misc. painkillers.

Throughout my life, I’ve supplemented medical care/treatment with alternative medicine, such as acupuncture, naturopathy, supplements, shiatsu massage.

Is there anything else about yourself that you would like to share?

I was born in Denmark and moved, with my parents and sister, to Canada in 1982 and consider both countries home. I’m the eldest, my sister Janne was born when I was 10 years old (that’s her sticking the bouquet in my face at her wedding – true sisterly love!). My family and I are blessed to have found a large chosen family both in DK and Canada, expanding our small family into a much larger one. I was originally a social worker and worked in policy development in the human rights field, but am now in my second career as a writer and photographer. Have the teensiest fascination with animals, especially tigers, share my home with Lucy the Wondercat and way too many books and I share my life with my love, David.

Lene’s blog is The Seated View (http://theseatedview.blogspot.com/) and she is a lead writer for MyRACentral.com http://myracentral.com/).

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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!

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