*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!
Pages
▼
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!
No comments:
Post a Comment