Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Well, I am an old time lurker. I found this group in 1999. I don't contribute too much anymore, but this list has been a lifeline for me. n was ten years old when she was diagnosed with systemic JRA. Rashes, fevers, arthritis. She has been on many things thru the years. Mtx, enbrel, prednisone, plaquenil, kineret, and several NSAIDs. n will be 19 next Saturday and doing pretty good. Not perfect, but I can't complain. At Christmas she had two wrists and 3 fingers injected. She is currently on methotrexate. She is a MAS survivor. MAS stands for Macrophage Activation Syndrome. Twenty months ago, she contracted mono, which threw her into MAS. She was in ICU and on a ventilator for a week. On a side note: Our local Children's Hospital asked if n would be open to be interviewed by a couple of authors writing a book on children with chronic illnesses. That was 3 years ago. I didn't think much of it at the time. I figured they were going around the country and interviewing hundreds of kids. They ended up interviewing 34 children. The book is out as of this week. It is an inspirational book in the children's voices. It is called Forever Hellos, Hard Good-byes. (n, almost 19, systemic) Quote Link to comment Share on other sites More sharing options...
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