Re: World Lupus Day and Other News

May 18, 2004

thank you so much for your post! trying to get more info on lupus

and I appreciate your comments!-

-- In LUPIES , MBard@a... wrote:

> 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

May 18, 2004