World Lupus Day and Other News

[Guest guest]

Hi, everyone!

I've been back from New York for several days, now, and have begun to put my thoughts together in terms of what I learned, did, saw, and experienced during my time there. Here are some highlights:

1) In New York, as part of the Lupus Foundation of America activities and those surrounding World Lupus Day (May 10) and the meetings of the 7th International Congress on SLE and Related Conditions, I met many fellow lupies. I have to say, everyone impressed me with their courage, eagerness to learn more and take charge of their disease, and enthusiasm for increasing awareness of and research for lupus. All I can say is a collective: You GO, girls (and guys)!

2) The first World Lupus Day was accompanied by much fanfare and some press coverage. It will be held each year on, I believe, the same day. So mark your calendars and spread the word! With increased awareness, we should be able to make better strides in getting more press coverage next year, too.

3) The state of lupus research is better than it was 5 years ago, but there is still a long way to go. I was pleased to see that research continues on fronts as diverse as studies to determine the number of lupus patients (and the incidence within various ethnic groups and countries) and those to isolate biologic markers. There was a very interesting session on cancer and lupus that showed new research indicating that lupies seem to have, overall, a 20 percent higher chance of developing cancer in their lifetime (meaning, if the general public's chance is 30 percent, a lupie's will be 36 percent). Even so, the higher incidence of cancer was attributable to only some specific kinds of cancers, especially non-Hodgkins and Hodgkins lymphomas. The take-away message from the researchers and rheumies at this particular session was that we lupies need to pay attention to getting our cancer screening tests on regular bases -- not to be afraid, but just be vigilant.

4) There is more of a concensus that the cause of lupus is due to a complicated combination of genetic propensity (with a series of genes playing a role) and some kind of environmental triggers. Sunshine was cited as a definite trigger, but there wasn't as great a concensus of other ones.

5) Several times, rheumies and researchers emphasized that lupies have to pay attention to their total health by keeping weight in check, not smoking, limiting alcohol consumption, getting appropriate exercise, and complying with prescribed treatments. To as great a degree as we possibly can, we have to control those things we can so that our treatments can be most effective.

6) The study on numbers of lupus patients hasn't been concluded yet, but preliminarily it looks like there are between 1.5-2.8 million lupies in the United States and several million worldwide. There are a lot of us out there!

7) I was very impressed with the joint cooperation between the Lupus Foundation of American and Lupus UK that made World Lupus Day happen. And I was impressed in by LFA in other ways, too. Some of the other major lupus organizations were at the congress, too, as were many pharmaceutical companies. One message that came out strongly to me and others was the need for us to WORK TOGETHER in all ways so that our collective voice can be heard. For too long, there's been a real fragmentation of the various players in lupology, patient services, advocacy, and awareness raising. To quote Helen Keller, "Along we can do so little, together we can do so much."

That's it for now. I'll probably think of more things.

Blessings, all!

Maureen

www.maureenpratt.com