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.
