AT THE WATER’S EDGE:

Last November, I spent a weekend in Chicago and was able to attend a brief part of the American College of Rheumatology’s Annual Scientific Meeting which was being held there.  I spent a day working in the Exhibit Hall on behalf of the Rheumatoid Patient Foundation (RPF), met other patients with Rheumatoid Disease that I had previously only known online, and also met a whole host of other online friends through a Tweetup.  You can read about my experience here — it was truly amazing.

Because of that, I decided that I would like to attend the entire ACR event this year, or at least be there for each day that the RPF booth will be open in the Exhibit Hall.  This year’s event will be held November 9 thru November 14 in Washington, DC, and I will be there along with a  group of RA patient volunteers to represent the Rheumatoid Patient Foundation.  We will share information from the patient’s perspective and also share information about the RPF to the attendees.  



This year, since I will be there for much longer, I am hoping to have the opportunity to also attend some scientific sessions.  Many hot topics in rheumatology, new research and new treatments will be presented and discussed.  There are TONS of sessions throughout the course of the event, and it’s hard just to sift through them all!  However, I did pick out a few that sounded interesting, and I’m looking forward to hearing information directly from the experts.

I am so excited for this opportunity, but I have a few fears, as well.  Firstly, I will be traveling alone this year.  Tom won’t be able to get time off work to join me — but I’ll be meeting up with friends as soon as I arrive and I’m sure I’ll be kept busy the whole time!  But I don’t like the traveling alone part.  Also, I don’t like big cities.  Traveling alone to big cities is not my idea of fun.  I managed to get to New York City and back on my own earlier this year, so I guess it’s onward to Washington!  


I’m also slightly concerned about the physical toll the event will take on me.  I plan on being at the exhibit booth most of the time — standing and walking around talking to people.  Last year, just the two days I was there wreaked havoc on  my feet and knees.  This year, I’m coming prepared — with prednisone!  I just picked up my prescription.  I’ll do a short 10-day burst just like I did for Isle Royale and hopefully forestall any RD attacks.  I have been feeling well lately, too (versus last year), so hopefully that will also play in my favor!


One initiative of the Rheumatoid Patient Foundation is to explore the idea of changing the name of “Rheumatoid Arthritis”.  Many patients, myself included, do not like the “a” word, because of it’s seemingly universal association with osteoarthritis.  It makes RA-awareness a difficult task because people already have incorrect, preconceived notions about what RA is.  You’ll notice that many of us have already begun to use terms like “Rheumatoid Autoimmune Disease” or simply “Rheumatoid Disease” interchangeably with RA.



So, the RPF is sponsoring a video contest and is asking people: “What is the most important REASON TO YOU for the name of the disease to be changed?”  Click here for details on how to enter.   One grand prize winner will receive a free digital camera, and two first prize winners will receive iTunes gift cards!


I’ll be sharing my experiences at ACR and I look forward to representing the RPF as we strive toward better awareness, education and research!