I had heard of JRA for years. I also knew it was certainly an autoimmune arthritic disease, that struck hundred of thousands of kids annually all over the world. Yet,it never occurred to me that they may possibly need a "different" type of highly specialized Rheumatologist (Pediactric Rheumatologist) who had more schooling and expertise in dealing with the children's type of illness. Often these children are "born" with it. From day one, even though the symptoms and signs may not manifest themselves for a awhile, or even if they do have symptoms many family care doctors, and pediactric doctors may not think about a child coming in with a myriad of "symptoms" over the course of several years, until one day a blood test, or something that the physician witnesses does the 2 plus 2 finally equal 4!
I had the fortunate experience of being in a group at the Arthritis Summit in DC this past March, with a gentleman, whose daughter was diagnosed with JRA when she was 9 months old! She celebrated 10 years of JRA this past month or so. Between all of the information he could tell us, his own experiences, his daughter's, and all that he has himself learned in order to help his own daughter along with the thousands of other kids, there was just so much he told me that I even with my research didn't know.
For one, we have "VERY FEW" Pediatric Rheumatoid Arthritis Specialists in the entire Nation! just in Texas alone, we have about 3 to handle ALL of these children's illnesses. Parents drive hundreds of miles, or even have to cross over go to a "pediatric Rheumatologist" for their child to get proper care. As huge as the state of TX is, there is only about 30 or less of these specialists. They are mainly around the Houston, Austin, San Antonio areas, the larger cities. So, kids that are off in West TX, or deep South TX, or in East TX, are the ones that parents must spend sometimes a few days getting them to their doctors for medications, blood work, testing and so forth. It is insanity.
Here is an event, from the Arthritis Foundation, especially for these kids. They have a camp they go to annually, that gives them a chance to "feel like normal" kids, and they can even bring "siblings" that can feel like they are a part of the process rather than feel like they are almost "left out" because a sibling seems to get more attention due to the JRA. It gives siblings a chance to "bond" and all feel equal and helpful. These are just incredibly amazing kids and I look forward to getting to know them better, and get a deeper understanding about their illness. Here is the URL about the upcoming JRA Camp.... take a moment if you will to read about this and how incredible these kids are.... to go through what they do... and still have such a positive and lively attitude... never feeling "sorry" for themselves, but having an understanding of how their lives will just be as they are because they have been this way since they were very little for some of them... they know not "normal" like us adults that sometimes don't get RA diagnosed until our 40's or older... if they have JRA from the time they are 9 months old... then that is "normal" for them....