Information on the American Juvenile Arthritis Organization?

Question:
I have an 11 yr. old with JRA. Just looking for any support and ideas that might be around. The amount of information is mind boggling and the various results even more disturbing. I would like to here from other parents whose child has JRA and how they are doing.

Answer:
Here are mostly related to adult RA, but as a mom whose daughter has JRA, I have learned a lot about various aspects of the disease here. And, IMHO, My daughter was diagnosed at age 3 with pauciarticular JRA. She is 17 now, and her disease has progressed to polyarticular, but she's doing well, driving, starting her senior year in HS, and planning for college in the near future. She has taken various Rx, including methotrexate and gold, and is now on Lodine. She also takes St. John's Wort, which has helped her so much in dealing with her down times, when she struggles with insecurity about being different than her peers. She is smart, and funny, and kind, and pretty, and an absolute delight to her family. She deals with pain on a daily basis, and she has good friends who support and help her. Our proudest moment came last year when she spoke at an assembly in front of 500 of her classmates, and told them what it's like to have a chronic disease. It took a lot of courage for her to do that, but then, facing her disease each day is a act of immense bravery. Excuse me for gushing, but she is my darling daughter, and has faced too much in the past 14 years. Have you gotten in touch with the American Juvenile Arthritis Organization? They have been very helpful to us. Their web site is: http://www.arthritis.org/ajao/ My daughter, Elena (12) was diagnosed with polyarticular JRA almost 2 years ago. We've been uphill and downhill since then. My other daughter, Pancha (17) has fibromyalgia, a muscular arthritis. I'm the lucky one, I only have osteoarthritis and bursitis. Anyway, I'd be happy to correspond with you, and wonder if your daughter would be interested in corresponding with Elena? It really helps to be able to talk to someone else who is in the same boat. Here's my short list of what to do: 1. Get a pediatric rheumatologist for your daughter--not only are they more knowledgeable about RA, but they know about how the treatments differ for children as opposed to adults. 2. Educate yourself as completely as you can about the disease and its treatments (see drdoc's web site, the American Juvenile Arthritis Association, etc.) 3. Educate everyone who has a role in your daughter's life: teachers and other school staff, pediatrician, day care, ministers, family, and so on. They all need to be part of the team that helps your daughter manage her disease. Be aware that she has certain rights by law, too, and be sure those rights are addressed by her school. 4. Take care of yourself-caring for a family member with a chronic illness places a huge stressful burden on you, and you can't be as compassionate as you need to be if you're not healthy yourself. If you haven't already looked at it, I suggest that drdoc's web pages are a good place to visit. His web pages are at: http://www.aztec.co.za/users/drdoc/index.html He's a rheumatologist in South Africa who donates a lot of his time to answering questions online. His web pages are among the best there are for thoroughness and completeness of information. The American Juvenile Arthritis Organization has a web page, too: http://www.arthritis.org/ajao/