Three weeks ago, Capitol Hill was full of excitement, engagement and the power of moving: moving together, specifically. The 2010 Advocacy and Kids Summit took place in Washington DC. It was my first time attending the Summit, and I have to admit that I was like a little kid in a candy store. There was so much information to take in, so many wonderful, strong-willed people to meet and so many stories of arthritis advocates, patients and families that touched me and empowered me all in one motion.
The week kicked off with Dr. Klippel, President of the Arthritis Foundation, greeting all of the advocates on Tuesday morning. And they were advocates from all but one state-very powerful group of people! His words were hopeful and encouraging, but he kicked off the overall theme of the power of moving together and taking arthritis to the hill by introducing us to two people who get right to the core of arthritis. We had to opportunity to hear from Dr. Wayne Giles from the CDC and Dr. Daniel Kastner, a Senior Investigator, Office of the Clinical Director from NIH who shared some interesting insight as to where treatments, research, and funding were standing on a Federal Level.
Hearing from Dr. Kastner made me truly believe that a cure is on the horizon because of how passionate and dedicated he is and not just full of facts. In the past 20 years, there have been so many medical discoveries in the field of Rheumatology, that dig deep into the core of what causes arthritis and it is hearing from people like Dr. Kastner, that push me further into the heart of arthritis and advocating for a cure!
While I was fully blown away by all of the facts that they were spitting out back-to-back, the most amazing part of the Summit was meeting a few families that were affected by arthritis that I happened to meet through the course of the conference. For instance, I met one family who has to travel six hours to see a pediatric rheumatologist. I met another who, when their daughter was first diagnosed, they were traveling 11 hours for her to get treatment!
While all of the kids who attended the summit and those who weren’t able to make it, but have arthritis, are all completely amazing and who I consider to be super heroes, I had the chance to meet Ry and Lucy who were part of my advocacy crew from Maryland. Ry and Lucy are both affected by JA and wanted their Senators and Representatives to know where they stand on arthritis and policy. Like most stories of courage, hope and awesome spirits, Ry’s story is best told from his own words. Below is the story that Ry took with us onto Capitol Hill and shared people on the Hill who needed to hear it from his perspective-not just from lobbyists.
A few words from Ry….
Hi, I’m Ry Bristow, a 13 year old that lives in Arnold, MD. I was diagnosed with Juvenile Rheumatoid Arthritis about 3 1/2 years ago when I was 10. My arthritis affects mainly my knees and ankles but has recently started in my spine. Before I was diagnosed I went through about a year of being misdiagnosed with overuse injuries and Lyme’s disease. During this time period of being misdiagnosed I was progressively getting worse and attended my 5th grade graduation in a wheelchair. Even when I was diagnosed it was still very hard because there were not enough pediatric rheumatologists in the area which means I did not have the medication that I needed. Now that I have found a doctor, even though he works in New York, I am on medicine that was working pretty well until last fall when I had a major flare up of arthritis in my spine.
This disease has greatly affected my life because I love to play sports. I played basketball, lacrosse, and even football one year. Besides the fact that arthritis makes it hard to play sports it also affects how I do in school. I am a straight-A student and would like to keep it that way but sometimes when I have a flare up I am not feeling good enough to get out of bed much less go to school. This year I missed the first month of school when arthritis in my spine caused muscle spasms in my back and rib area.
Sometimes when I’m feeling good enough to play sports with my friends they ask me if the medicines take away the pain. Sadly the answer is no. I wake up in some form of pain every day. The meds just help me to be able to cope with the pain and try to live a normal life. Some days are better than others but no day is pain free. If I think about it, I realize that I haven’t had a day without pain in almost 4 years.
Hopefully, by giving speeches and talking to Representatives and Senators, like you, I can make a difference and try to get more support to get laws passed to try to get more doctors and hopefully even find a cure. I realize that what I, along with many others, am trying to accomplish may not happen soon. If what I’m doing doesn’t make a difference in my life I hope it does for other kids that are in the same position that I was when I was first diagnosed. I hope that they will be diagnosed right away, have somewhere to turn, and a doctor to go to. Hopefully if what we are trying to do succeeds very well there will even be a cure for JA. This is the purpose of me coming here to talk to you, to ask you if you could please consider voting to pass the bill to try to get more funding for arthritis research and prevention. I am also asking you to co-sponsor the Arthritis Prevention, Control, and Cure Act. Thank you for taking time out of your day to talk to me about this important issue.