Recently, I read an article in The Rheumatologist (preceding a new PR campaign by the American College of Rheumatology), “An Identity Crisis for RA: A few suggestions to bring rheumatic disease the recognition and respect it deserves.” I strongly recommend that you read the article since I cannot quote it entirely here. It was written by a rheumatologist, but you’ll see many points that seem very familiar.
I used their contact link to send in the following Letter to the Editor. I had contacted Dr. Adams to thank him for the article and he suggested I write a Letter to the Editor. Hopefully, they’ll publish my letter.
My Letter to the Editor of The Rheumatologist:
Dear Editors at The Rheumatologist:
Thank you for the article “An Identity Crisis for RA; A few suggestions to bring rheumatic disease the recognition and respect it deserves” 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. If only the whole article could be condensed onto a t-shirt!
Over the last three years, I’ve written about 600 articles about RA, published on my website and other sites. I’ve 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. The problem is as Adams clearly sees it and profoundly states it:
“Who among our citizenry believes that, on any given day in the future, he or she could suddenly wake up with a dozen or so hot, swollen joints radiating intense pain throughout the body, an inflammation which might literally continue for the rest of the individual’s life?…Virtually any day of the week, you find some reference in the media to ‘Avoid arthritis, take vitamins, and exercise!’ How offended our patients with rheumatoid arthritis (RA) must feel when they see this deceptive advertising. It’s inconceivable that patients in this day and age should be made to feel shame or guilt for ‘having allowed’ this devastating disease to happen to their bodies!”
I made very similar statements to ACR Research Education Foundation’s Steve Echard at last year’s annual Scientific Meeting in Atlanta. As I read Dr. Adams’ article, I heard my own words echoed. It seemed like he had read the articles which I’ve written about RA, even this very old one on HCP Live. In reality, Dr. Adams and I had no contact before I called him last week.
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.
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).
The first non-profit organization for RA was founded earlier this year, the Rheumatoid Patient Foundation (RPF), dedicated to this purpose. With greater public awareness will come appropriate recognition, research funds, and programs to improve the lives of people with RA.
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.
Will you also stand with us? Within a few days as our website is opened, 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.
- 3 Reasons Why the Public Image of RA Is So Rosy
- RA Is Not “arthritis”: a PSA on Rheumatoid Arthritis
- Is It Time for Rheumatoid Arthritis Awareness?
- A Patient Foundation for Rheumatoid Arthritis