Tuesday, March 03, 2009

Lupus Foundation of America’s 11th Annual Advocacy Day

Today, Tuesday, March 3, 2009 is the Lupus Foundation of America’s 11th Annual Advocacy Day on Capitol Hill. Even if you cannot physically be there, there are still several things you - and your family and friends - can do to help raise awareness about the seriousness of lupus.

What Lupus is and the 11th Annual Advocacy congressional message can be read here.

Call your Representative and Senators and tell them to provide more funding for lupus research. To find your Senators and Representative, go to http://www.capwiz.com/lfa and click on the link “Call your Members of Congress Tuesday, March 3rd!” Then you will enter your zip code, and get the contact info for your senators and representative.

AS AN E-ADVOCATE FOR THE LUPUS FOUNDATION OF AMERICA, I ASK YOU TO PLEASE TAKE A SECOND OF YOUR TIME TODAY FOR THIS CAUSE.

Join me and call Congress and tell them 50 years without a new FDA-approved lupus drug is too long. http://www.capwiz.com/lfa

90% of people with lupus are women. IT'S BEEN 50 YEARS SINCE THE LAST DRUG WAS APPROVED BY THE FDA FOR TREATMENT OF LUPUS.

As someone with a mixed connective disease/auto-immune disorder (a little bit of lupus, scleroderma, Sjogrens, the list goes on) and as someone who has used many of the drugs available out there for "treatment"-methotrexate injections weekly for a year, Imuran, Plaquenil, Prednisone, the list goes on and on, something needs to be done. As a side note, none of the treatments worked for me with the exception of Prednisone helping stabilize me at my worst times, and and a result of basically taking the Prednisone for too long and too high doses and yes, I was seeing the "best" rheumatologist in Philadelphia, I have permanent neuropathy of both feet from it. Only upon switching doctors and the long withdrawal from Prednisone and I now am in remission (heard two weeks ago) for the first time in 7 years! Four years ago, I was so sick I needed a walker. How long will I remain in remission? They don't know-3 months, 3 years, forever. It's a crap shoot.

Rheumatologists hands are tied, what works for some, does not work for others and more research needs to be done, but because it affects primarily women and isn't a Hollywood "hip" disease, it falls by the wayside. Sheryl Crow (whose sister has scleroderma), Bob Saget (whose sister died from the disease, Jason Alexander and other celebs got involved, funding for research was next to impossible.

Thank you Kari for posting about this important event.

1 comment:

Laura said...

Deneen,

Wow, it seems like you've really gone through a lot with the lupus. I admire you for handling it so well.

I had a female friend/coworker with lupus. She had such a hard time working because of it. I know some days she couldn't even get out of bed because she was so sick, and some employers weren't very understanding. I don't know which specific medications she was taking, but I know one of them made her gain a lot of weight, and she hated it. She ended up losing her job about a year ago, and moved, and I lost touch with her. Your post made me think about her, and wonder how she's doing.

I also thought how as far as women's diseases go, how much attention breast cancer gets (and yes, it's a terrible disease - my husband's mother died of breast cancer), but that it seems like lupus is largely ignored.

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