A T2T Solution
The July issue had a “Rhuemination” on “T2T” approach. I have been using DAS28 since a preprogrammed calculator was provided by Abbott at one of the EULAR meetings.
My colleague Dr. Gogia (an old student of mine) and I have been involved in the development of an EMR for rheumatology practice since 2005; it was fully developed and implemented for routine use in my private clinic as well as in the department of rheumatology at a hospital where I work now. A paper has been published by us giving the details of this EMR.
The beauty of this EMR is that all the outcome measures—DAS28, CDAI, SDAI—are displayed in real time as you are performing the examination and your secretary or clinical assistant is entering the information. In India, going online is not always possible. Therefore, a built-in, embedded calculator was found to be a better option.
Prof. Anand N. Malaviya, MD
Ex-Head of the Department of Medicine and Chief of Clinical Immunology and Rheumatology Services,
All-India Institute of Medical Sciences Consultant Rheumatologist,
“A&R Clinic” Visiting Senior Consultant Rheumatologist ISIC Superspeciality Hospital
New Delhi, India
Patients React to Rheumatology’s Identity Crisis
Thank you for the article, “An Identity Crisis for RA,” by R. Franklin Adams, MD (August 2011).
I’d like to quote the article to underscore the parts I liked best, but I’d quote almost the entire piece.
Over the last three years, I’ve written about 600 articles about RA and read hundreds of news stories, academic articles, and patient blogs. Meanwhile, I’ve received at least 100,000 responses directly from RA patients and lived full-time with the disease myself. What have I discovered?
Being lumped with “arthritis,” RA has no identity. Patients have already dropped the “a” word and begun to refer to RA as Rheumatoid Disease or Rheumatoid Autoimmune Disease. Statistics about mortality rates and research funding are terrible. As I read Dr. Adams’ article, I heard my own words echoed.
Astonishingly, by way of different roads, we have come to the same conclusions: RA is a serious disease that is misunderstood by most people, including many professional people and medical personnel. According to Mayo Clinic research, the lifetime risk of developing RA is 3.6% for women and 1.7% for men. For the sake of RA patients and everyone in society (potential RA patients and their loved ones), change must come now.
Dr. Adams mentions key strategies that have also been advocated by patients through the RA Warrior community, especially RA nomenclature issues. I believe the most successful approach will be one that allows patients, researchers, and doctors to combine efforts to attack the problem of RA on every level (both its identity and its cure). With greater public awareness will come appropriate recognition, research funds, and programs to improve the lives of people with RA.
The Rheumatoid Patient Foundation (RPF), the first nonprofit organization exclusively for RA patients, was founded earlier this year. If there is anything that could be more encouraging to me as a friend and advocate of RA patients than to read this article written by a rheumatologist, it is the response of Dr. Adams to the RPF. He indicated that the work of the RPF is welcome and long overdue in the rheumatology nation. The RPF’s website is rheum4us.org, and everyone interested in improving the lives of RA patients is welcome to become a member. I hope that many physicians will lend support so that together we can create the groundswell of change that will help us to defeat the monster that we call RA.
Kelly Young
Creator and writer, RA Warrior Founder,
RA Patient Insights, LLC Founding board member
Rheumatoid Patient Foundation
I admittedly am a tough sell when it comes to articles written about RA and similar diseases. Why? Because, as a patient myself, the autoimmune arthritis examiner on Examiner.com, and the founder and CEO of the first nonprofit in history to exclusively benefit those affected by autoimmune arthritis, I have seen literally thousands of stories about what can help RA—but this is the first time I have felt compelled to write the author [Dr. Adams] and offer a standing ovation! BRAVO!
I started the International Autoimmune Arthritis Movement (IAAM) as a movement of awareness specifically due to everything stated in this article. After starting IAAM, I was flooded with hundreds of emails from around the world, thanking me. Before long, I realized part of the reason the misunderstandings were happening is because these diseases aren’t separated, but rather generalized under the “arthritis umbrella,” mainly due to advertising.
Before naming IAAM, we researched alternative names for these inflammatory diseases (RA, PsA, JA, AS, SLE) and in several journals we found the term “autoimmune arthritis.” From then on, that’s how we categorized these diseases—hence the name of the organization. Since we began broadcasting this term, we’ve seen it used all over the Internet and even by the Arthritis Foundation. The ACR is actually very supportive of us as well. The other two founders and I are Advocates for Arthritis, chosen annually by the ACR, who visit Washington D.C. to address congressional representatives about current issues patients face in their daily lives.
On May 7th, 2011 (my 40th birthday of all days), I received the best gift ever-—the official notification of nonprofit status for IAAM. The first program we have implemented is the Media Awareness Hotline, providing patients a tool to report misinformation published or broadcasted in relation to autoimmune arthritis. Clearly, as Dr. Adams so eloquently stated in his article, there is a need to stop advertising that only adds to the frustrations of those suffering from rheumatoid arthritis and similar diseases. It is people like Dr. Adams who will help us to make a difference.
Tiffany Westrich
Founder and CEO
International Autoimmune Arthritis Movement
Thank you for the article, “An Identity Crisis for RA,” by R. Franklin Adams, MD.
You can’t even imagine what it meant to me—as a person with rheumatoid arthritis—and the validation I felt from reading it.
I could go on and on but I will leave you with BRAVO!!!!
Terri
I just wanted to let your magazine and Dr. Adams know how much I appreciated reading the article online. To know that a lot of the doctors who treat us as patients also feel the same way about rheumatology and the misconceptions makes it a little easier.
Thank you very much!
Tamara in Canada
