June 15, 2011

Jenny's Notebook: What Happens in Miami…Gets Shared In My New LFA Blog!

Part One of Jenny's recap blog about her recent trip to the Pediatric Rheumatology Symposium sponsored by the American College of Rheumatology, where the focus was on lupus in children and adolescents.

Tuesday, May 31. Bought new luggage yesterday; the downside of new luggage: compulsion to fill with clothing. Colors for Miami should be white or turquoise, right? I took everything that matched. Bought new shoes too, in effort to postpone bunion surgery. Avoiding all unnecessary surgeries is high on the list when you have lupus.

6:30 p.m. – Arrived at the hotel just in time for the principal investigators’ supper sponsored by CARRA, the Childhood Arthritis & Rheumatology Research Alliance. I’m a member of the lupus sub-group, representing the patient perspective as well as views of parents of young people with lupus. The group has a lupus registry, so if your child or teen has lupus, they’d love to hear from you: www.carragroup.com.

Wednesday, June 1. Early to bed and early to rise… this is the sunrise from my balcony

Joined CARRA lupus group for discussion on developing guidelines for steroid use in treating young people with lupus nephritis. After lunch, discussion switches to use of immunosuppressive agents, followed by debate on merits of the repeat kidney biopsy. This subject has many sides but the danger of bleeding predominates—although the rate of complications can be as high as 6%, only 0.1% will need blood transfusion or experience life-threatening issues. The group agrees to expand outreach to pediatric nephrologists. So many tables and figures—must always keep in mind that these statistics represent real people.

Thursday, June 2. 9 a.m.-11:30 a.m. CARRA meeting concludes with members talking about various projects—the lupus presentations are awesome. Topics included puberty and antiphospholipid antibodies; effects of vitamin D3 on immune function; findings from the APPLE clinical trial—the largest ever done in children—looking at treatment with statins; laboratory markers of cardiovascular disease in young people (more on that later). Need to ask someone about preferred wording when referring to lupus in young people; so far have heard childhood onset lupus, pediatric lupus or SLE, juvenile lupus or SLE.

1:30 p.m. The Pediatric Rheumatology Symposium (PRSYM)—sponsored by the American College of Rheumatology, the primary organization for rheumatologists—gets underway, with the opening lecture on chronic inflammation and its effects on cancer and the immune system. Later presentation topics included autoantibodies that appear in new-onset pediatric lupus and a certain type of cell that appears when lupus is active, which may be useful in anticipating a flare before it occurs.

6 p.m. Back in the room for a rest before supper, but I’ll wait til the sun goes down to take my walk on the beach.

To be continued…

1 comment:

AlyssaJacobs said...


My name is Alyssa Jacobs. I have been reading through your blog and I am finding it very interesting. I love to write and I think I could make a great contribution to your page. If this is something that you would be interested in, then shoot me a quick email when you get a chance.

Kind regards,
Alyssa Jacobs