*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Friday, July 30, 2010
Day 2 of the JA Conference
I knew that this would be an amazing, rewarding experience, but I had no idea how amazing. With still one more full day & a short day left, I've already learned so much. We learned this morning how 80% of meds used for children with Juvenile Arthritis have no long-term data regarding side effects. We learned of the efforts that a group called C.A.R.R.A. has made towards a national registry, & determining which meds work best for different diseases. Despite having researched medications so much I sat in on a medication session. i learned, for one, that Methotrexate does not generally drop one's white cell counts like Em's drop. I learned more of the HOW of these meds, which we also discussed in the Genetics session. That was fascinating! We discussed siblings risk factors & the research regarding which markers exactly cause JA and why. 1 to 4 kids per 1000 are affected by JA, more than are affected by diabetes, or cystic fibrosis. and now I must crash. good night!
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