Alliance for Lupus Research

Great posts here. Glad you could start such a constructive conversation Brett!

Dot....that all sounds GREAT, but I do not see free healthcare coming in my lifetime......I have paid as much as right at $1000 a month for my daughter and I to have health insurance and it was the best plan offered under the company we had.....but, once my job was gone, and I had to switch to Cobra, things have been a NIGHTMARE!!! I haven't been ... Read Morecovered by anything since the end of August, EVEN THOUGH I am making my payments......so, if someone has ties with Mr. Obama, please tell me how to contact him and maybe, just maybe he can tell me what/how to get my insurance coverage back........after all, I am the one whose disease just continues to ravage my body on a daily basis, while the "higher ups" play games with my life!!!

getting insurance to pay for off label and experimental drugs is hard. Chemo costs an arm and a leg, ecspecially being off label. Steriods have their own negatives. If this gets approved and helps people, it can help them potentially go into remission and potentially not go broke at the same time.

There's a big difference between experimental and off-label. Have you really had a problem getting insurance to cover off-label drugs?

i was just about to lose it...thanks goodness!

I hear you Joanne!! Here's to ALL of US that are/where on the verge of "loosing it".A disease that is so time crucial..now the doors seem to have been OPENED>>>NEVER LET them CLOSE AGAIN for any amount of time!!Lets keep it in the public's FACE..the time is NOW!!

Awesome!

Yahoo!! :0))

My prayer is that a cure will be found before anyone else in my family has to suffer, especially with the blood disorder part of this insidious disease......I support any of the research. I have been in one medical research study and will do it again in a heartbeat!!!

i wish i could go. i live in south florida

See you all there! I am getting super excited.. You are a great group of women and I am so glad that our paths have crossed!!

YAY! Pics are up!

I can walk but not far, I am doing water aerobics which really helps..who would I talk to about a story...I have Lupus and I helped our Government with 9/11

I take plaquenil and prednisone.. I have to get my eyes checked every year becauses plaquenil causes blindness .. have anyone heard about that book called lupus love a book explaining lupus to children my nieces dont understand soemtimes

I've never taken Plaquenil, but these are my eyes (retinas, actually) on lupus a few years ago: http://followmylupus.com/images/MyEyesOnLupus.jpg

That would be wonderful! The Las Vegas, NV walk is Nov. 7th.

Thanks for the shout out. Yup it's Sofia's Angels which means you have to repost tomorrow. lol
Please help if every fan simply donated $1.00 we can raise $2220.00 along with the other 5k we raised. Please help!

I am a man with SLE and here. I agree, based on the number of men I talk to with lupus there is a lot of information out there that people need and want access to.

I just became a fan and I'm in remission. Does that count?

Thnaks Brett! Of course it counts :) And I hope your health stays well.

are these trials in the detroit area?

Back in 95' I was diagnosed with all but one gene I think it was the 7 they identified back then. This article also talks about cigarette smoke being a trigger...as a child I was constantly exposed to 2nd hand smoke. Once I was out of the house, then none at all, but at 24 was when I was diagnosed with Lupus. It doesn't really explain much about how cig. smoke affects it.

Both my parents smoked, my Mom had Lupus. I smoked for over 40 years(quit4 months ago..Yea) Neither of my daughters have it. Thank God! Much more research to be done!! I believe a lot has to do with hormones.