Comments for Lupus, the Adventure Between the Lines http://lupusadventurebetweenthelines.wordpress.com One Patient's Positive Perspectives Sat, 18 May 2013 08:22:16 +0000 hourly 1 http://wordpress.com/ Comment on Lupus Fact & May 17, 2013 Blogger “Put on Purple” Hall of Fame by Put On Purple: Lupus Awareness | karensunhumbleopinion http://lupusadventurebetweenthelines.wordpress.com/2013/05/17/lupus-fact-may-17-2013-blogger-put-on-purple-hall-of-fame/#comment-1547 Sat, 18 May 2013 08:22:16 +0000 http://lupusadventurebetweenthelines.wordpress.com/?p=7919#comment-1547 […] Lupus Fact & May 17, 2013 Blogger “Put on Purple” Hall of Fame (lupusadventurebetweenthelines.wordpress.com) […]

]]> Comment on Lupus Fact & May 17, 2013 Blogger “Put on Purple” Hall of Fame by dominateyourdiagnosis http://lupusadventurebetweenthelines.wordpress.com/2013/05/17/lupus-fact-may-17-2013-blogger-put-on-purple-hall-of-fame/#comment-1544 Fri, 17 May 2013 22:20:19 +0000 http://lupusadventurebetweenthelines.wordpress.com/?p=7919#comment-1544 I liked seeing all the pics. Thanks for sharing.

]]> Comment on Coping with Lupus: Fact #17 – Drug-induced lupus is reversible! by Lupus Fact & May 17, 2013 Blogger “Put on Purple” Hall of Fame | Lupus, the Adventure Between the Lines http://lupusadventurebetweenthelines.wordpress.com/2012/05/17/lupus-awareness-fact-17/#comment-1543 Fri, 17 May 2013 20:06:13 +0000 http://lupusadventurebetweenthelines.wordpress.com/?p=4456#comment-1543 […] To learn more about this lupus fact, please read my post from  May 17, 2012. […]

]]> Comment on Coping with Lupus: Fact #16 – Discoid is the most common lupus by Lupus Fact & Blog of the Day No.16 – Discoid Lupus & Molly’s Fund – More than a Blog | Lupus, the Adventure Between the Lines http://lupusadventurebetweenthelines.wordpress.com/2012/05/16/coping-with-lupus-fact-16-discoid-lupus/#comment-1540 Thu, 16 May 2013 12:06:46 +0000 http://lupusadventurebetweenthelines.wordpress.com/?p=4454#comment-1540 […] To learn more about this lupus fact, please read my post from  May 16, 2012. […]

]]> Comment on Coping with Lupus: Lupus Fact #15 – Four Types of Lupus by Lupus Fact & Blog of the Day No.15 – Dominate Your Diagnosis & Four Types of Lupus | Lupus, the Adventure Between the Lines http://lupusadventurebetweenthelines.wordpress.com/2012/05/15/coping-with-lupus-lupus-fact-15-four-types-of-lupus/#comment-1539 Thu, 16 May 2013 07:42:56 +0000 http://lupusadventurebetweenthelines.wordpress.com/?p=4452#comment-1539 […] To learn more about this lupus fact, please read my post from  May 15, 2012. […]

]]> Comment on Lupus Fact & Blog of the Day No.14 – Lupus Survival Guide & Toning Up by dominateyourdiagnosis http://lupusadventurebetweenthelines.wordpress.com/2013/05/14/lupus-fact-blog-of-the-day-no-14-lupus-survival-guide-toning-up/#comment-1538 Wed, 15 May 2013 23:20:58 +0000 http://lupusadventurebetweenthelines.wordpress.com/?p=7846#comment-1538 I am on the same journey with weight loss and exercise. I keep telling myself slow and steady. It certainly does help the lupus. Great post.

]]> Comment on Lupus Fact & Blog of the Day No. 13 – Flow on Lupus and Fatigue by dominateyourdiagnosis http://lupusadventurebetweenthelines.wordpress.com/2013/05/13/lupus-fact-blog-of-the-day-no-13/#comment-1537 Wed, 15 May 2013 23:02:42 +0000 http://lupusadventurebetweenthelines.wordpress.com/?p=7826#comment-1537 I am reading this on Wed and hoping you have recovered from this challenging day. Thanks for sharing all these interesting bloggers with us this month.

]]> Comment on Lupus Fact & Blog of the Day No. 10 – Ten Minutes for World Lupus Day! by Lupus Adventurer http://lupusadventurebetweenthelines.wordpress.com/2013/05/10/lupus-fact-blog-of-the-day-no-10-ten-minutes-for-world-lupus-day/#comment-1535 Wed, 15 May 2013 16:39:23 +0000 http://lupusadventurebetweenthelines.wordpress.com/?p=7782#comment-1535 Jen: You are so accurate in your read on this issue. This is why we need to lobby both sides of the aisle in Washington to urge a non-partisan support for NIH funding for the important research to support new drug development and clinical trials.

We need to 1) write letters and meet with senators and congressmen to lobby for NIH and other research funding, 2) participate in clinical trials of new drugs, 2) participate in Lupus walks to raise funds, 3) get involved with LFA chapters, and 4) blog with part of our goal to be encouraging others to get involved similarly. I have done all these things to try to make a difference!

I love to tell the story of how the funding I lobbied for in Washington was granted and funded trials of drugs that I later received in Phase III clinical trials that led to a five-year near remission of my lupus. I was at a point where there was nothing left to take and everything available had failed to control my out of control CNS lupus and liver involvement. I was ready to go on disability and who knows how long I could have kept functioning.

We need to never lose sight of how big the challenge is you described, and yet how every dollar spent in research trickles down to affect individual patients with lupus, even from benefit received in the trials of new drugs. It was life and lupus changing benefits I received. I am LIVING proof!

Thanks for diving into these issues with me with your well spoken comments. I love it! LA

]]> Comment on Lupus Fact & Blog of the Day No. 10 – Ten Minutes for World Lupus Day! by Jen @ And Two More Makes FIVE http://lupusadventurebetweenthelines.wordpress.com/2013/05/10/lupus-fact-blog-of-the-day-no-10-ten-minutes-for-world-lupus-day/#comment-1534 Wed, 15 May 2013 13:02:44 +0000 http://lupusadventurebetweenthelines.wordpress.com/?p=7782#comment-1534 Biologic drugs are, as a whole, terribly problematic. The profit margins for biologics are so much smaller than for “chemical” drugs that the pharma companies are making a much riskier investment…not only will they recoup less money on biologic drugs before the patent expires, but if something goes wrong, they lose the billions they spent in R&D. (I’m a chemist-turned-sales-rep for a company that sells scientific information…so I’m familiar with big pharma!) Obviously, there’s no easy answer, but the inherent problems make progress and accessibility much more difficult for patients. Ultimately, pharma is a business and they are financially unstable now, and the US government is cutting funding to R&D, so the end result is less drug development and basic research.

How’s that happy thought for a Wednesday morning!?!?!?!? :-)

]]> Comment on Coping with Lupus: Fact #14 – Balanced Exercise and Rest Maintains Strength by Lupus Fact & Blog of the Day No.14 – Lupus Survival Guide & Toning Up | Lupus, the Adventure Between the Lines http://lupusadventurebetweenthelines.wordpress.com/2012/05/14/coping-with-lupus-fact-14-balanced-exercise-and-rest-maintains-strength/#comment-1531 Tue, 14 May 2013 16:50:48 +0000 http://lupusadventurebetweenthelines.wordpress.com/?p=4447#comment-1531 […] To learn more about the truths of lupus and exercise, please read my post from  May 14, 2012. […]

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