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Patient advocacy

ACR REF Rheum Research & Courage That Won’t Back Down

Kelly Young 11 Comments , ,
“Hey baby, there ain’t no easy way out… I won’t back down.” We just got back from Miami from the ACR Research Education Foundation (REF) RA Investigators’ Meeting where important research topics were discussed such as Lung disease of RA – our 2nd leading cause of death Rheumatoid heart disease research Porphyromonas gingivalis and the pathogenesis of Rheumatoid Arthritis On...Continue reading      11 Comments » Read more

ACR’s Research Education Foundation Investigators’ Meeting

Kelly Young 4 Comments , ,
REF RA researchers focus on progress The American College of Rheumatology’s Research Education Foundation has gathered over 50 researchers from across the U.S. to present their data from the Within Our Reach RA studies. They’ll be brainstorming ways to collaborate in finding a cure for RA. The meeting will feature a wide range of RA research topics that...Continue reading      4 Comments » Read more

Hear My RA Interview on KISS FM! Plus Updates & Coupons

Kelly Young 41 Comments , , ,
Over the last two weeks, I haven’t been able to write very much because of 2 roadblocks: Do you have RA in your shoulder? Lately, I’ve just cried and lay with heat or ice on mine. Some days, I couldn’t lift it forward from my side even an inch, no matter how hard I tried. At least this...Continue reading      41 Comments » Read more

Positive Signs for Rheum Patient Activism

Kelly Young 4 Comments , , ,
Seeing is believing: rheum patient activism Last Friday, a meeting of the Emirates Society for Rheumatology (ESR) in Abu Dhabi heard a presentation from Katrina Thornley who has had Juvenile Rheumatoid Arthritis (JRA) for 27 years (since age 2). Dr. Mustafa Al Maini, President of the ESR, comparable to our ACR (American College of Rheumatology), called...Continue reading      4 Comments » Read more

A Patient Foundation for Rheumatoid Arthritis

Kelly Young 75 Comments , ,
Almost every day I talk with RA patients via email, telephone, blog comments, or Twitter and Facebook. Almost every day, another RA patient tells me that their doctor, nurse, spouse, or employer does not understand or believe them about some aspect of their RA. Almost every day, I am frustrated because I can’t do more to help. Over...Continue reading      75 Comments » Read more

The Tug of War of RA Awareness: Privacy of Pain & Agony of Disclosure

Kelly Young 60 Comments , , , ,
This week’s post on Rosalind Russell raised some important questions. A comment by Ronda was highly critical of Russell for the way that she hid from the public the severity of her suffering due to Rheumatoid Arthritis. How can we raise awareness if we hide how bad it is? It’s a good question. Rosalind Russell was...Continue reading      60 Comments » Read more

Adding RA to the SSD Compassion Allowances List?

Kelly Young 26 Comments , ,
Hearings receive testimony on RA & other autoimmune diseases Hearings were held yesterday, March 16th, about adding some autoimmune diseases to a list of conditions deemed disabling enough to be given specific consideration and hopefully quicker Social Security Disability approval. The list, called the Compassionate Allowances List currently includes 88 conditions. This week’s hearing was the 7th...Continue reading      26 Comments » Read more

Alice Goes to Jacksonville: Mayo Clinic Center for Social Media

Kelly Young 11 Comments , , ,
What’s the Mayo Clinic Social Media Health Network? I joked a lot about Alice in Wonderland this week as Katie Beth and I traveled to Jacksonville for the first meeting of the Advisory Board for the Mayo Clinic Center for Social Media (MCCSM). It was combined with a conference for members of Mayo Clinic’s new Social...Continue reading      11 Comments » Read more

Three Things Not to Say about Plagiarism to a Blogger

Kelly Young 55 Comments , ,
1) Oh, that’s just flattery, they like your writing. 2) Well, at least the message is getting out. 3) Don’t say anything because that will make you look bad. All of these have been said to me. And I’m not buying it. Click image to enlarge. My regular followers know that for I’ve been typing away about Rheumatoid Arthritis on...Continue reading      55 Comments » Read more

Rheumatology Blog Carnival #2: How Can Diagnosis Be Improved?

Kelly Young 12 Comments , ,
Welcome to the second ever rheumatology carnival, a blog carnival on diseases of rheumatology such as Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, Sjögren’s syndrome, and Juvenile Arthritis. You are in for such a treat. I hope you’ll take time to read each of the blogs that was submitted. What would improve diagnosis of RA or other...Continue reading      12 Comments » Read more

American College of Rheumatology Annual Meeting 2010

Kelly Young 29 Comments , ,
What’s the American College of Rheumatology? The American College of Rheumatology (ACR) is an organization of doctors wanting to learn the latest research in rheumatology or who contribute to that research. The better rheumatologists around the world attend the ACR’s annual Scientific Meeting or are members of ACR. (Because of expense and busy practice, many members attend...Continue reading      29 Comments » Read more
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