As far as other viruses are concerned, it’s the same as with any other person you might date, lupus or not.

http://butyoudontlooksick.com/

Yes, the LFA does its best, as do the S.L.E. Foundation in New York and its affiliated Lupus Research Institute (a separate outfit from the Alliance). My point was simply that developments occur fast these days, and no one Website is able to keep up. A blog like this one is often able to get news up faster than a more formally organized site, which must often await a multitasking webmaster’s attention to have text changed or added.

–Dodi Schultz 11/29/07

there are other lupus groups out there. for example, the alliance for lupus research is focused entirely on research. that is founded by robert wood johnson, an MD whose daughter has/ had lupus.

there are several others, but i’d bet that groups is most up to date. no one organization can be all things to all people so i am grateful that there is more than one org out there, tho i wish they’d coordinate… there’s some group in NY city that does a walk every year and declares march.. or may? to be lupus awareness motnh, when LFA uses october (which unfortunately is the same as breast cancer awareness, a tough shadow to crawl out from under) … the NY group uses the color orange and a “loop” (orange bracelet) while the rest of us use purple and a butterfly.

so i gotta say public awareness still ahsa way to go, but it is far better than in 1992 when i was diagnosed. the reason we patients are secretive about our diagnosis is that we don’t want to have to explain lupus and calm people’s fears that it might be contagious, plus we don’t want to be treated like we have the plague.

There may be a widget that I can add to one of the sidebars that will make it easier to follow discussions here.

I will investigate and do what I can. I got the second edition of your book a week ago, and will continue working through it.

BTW, illustrating my point about change: a specific medication has just been FDA-approved for fibromyalgia. And questions have been raised about one of the lupus drugs. Even LFA (my book, incidentally, has its seal of approval), from what I’ve seen of its Website, can’t keep up and doesn’t try.

– Dodi Schultz 11/24/07

The diagnostic criteria haven’t changed since the first edition was published, and that chapter contains much the same information as before, improved (we hope) by some reorganizing. But we look at a number of new and future treatments. And we devote increased space to the various conditions that overlap with lupus or bedevil lupus patients with marked frequency, including APS, fibromyalgia, recurrent shingles, and so on.

We also include a list of links to Internet sites–not, unfortunately, including this one, which apparently didn’t yet exist when the book was in preparation.

If you have any comments or questions about the newer edition, I’d be happy to reply here.

–Dodi Schultz

I presented initially with 3 of the criteria.

OH, roadblocks. My primary care physician of 5 years threw up his hands and told me he did not know enough about autoimmunity to help me. He also asked if it was a possibility if I was crazy because he ‘couldn’t figure me out’. Yes, I’m serious. I had a positive ANA 1:640, sky high sed rate and C reactive protein, joints so swollen I could barely walk. sigh.
I found a reputable rheumatologist who has not diagnosed me with lupus, but yet is treating me as if it is so with lupus meds. It takes time. I personally don’t want the diagnosis!! But is inevitable. Right now I’m dianosed with MCTD, dermatomyositis and palendromic rheumatism.