Wednesday, July 1, 2015

Quick Lupus Survey - conducted by a lupus patient to benefit lupus patients!

I was recently contacted by Kathy Castle, a doctoral student in the Department of Communication Studies at the University of Nebraska-Lincoln. She's conducting research that she hopes will improve the understanding of communication in family contexts for women with SLE. As someone with SLE, she's interested in conducting research that is aimed at better understanding the way that families communicate about SLE. What a great way to embrace your disease!

She's inviting people to complete an online survey about their experience with SLE. The survey takes 15-30 minutes, and here are the requirements to participate:

*Must have been diagnosed by a medical physician with SLE lupus at least one year ago

*Must be at least 18 years old to participate 
---**Nebraska, Alabama, and Mississippi residents - see special age requirements below.

*Must be a woman

I hope you'll take a few moments to help a fellow lupie sister. Wouldn't it be a great, easy way to take part in a little lupus research!?

To access the survey and participate in the research, simply click on this link:

**To participate: Participants in the states of Nebraska and Alabama must be at least 19 years old or older to participate, participants in the state of Mississippi must be at least 21 years old to participate.

Monday, June 29, 2015

Traveling in style - taking my lupus medication on the go!

The Zoe Pillfold: slim, stylish, and discreet. Perfect for a night out, or a weekend away. Traveling with my pills to the LFA's Advocacy Awards Dinner never felt so swanky. 

My current anemic status forces me to take my iron pill at mealtime. So if it's out to dinner I go, the pills have to come, too. Thank goodness I don't have to sacrifice style for adherence! 

Friday, June 26, 2015

LFA's Capitol Conversation - 21st Century Cures Act, dinner, drinks, and decisions to cure lupus!

I had the honor of accompanying my friend to the LFA's National Advocacy Awards Dinner last week. We had a wonderful time! It was a great night for lupus advocacy, and the event featured a refreshing panel discussion with leaders from Congress, Federal Agencies, Industry, and Research - dedicated, passionate high-level people who were there solely to discuss the need to accelerate cures for lupus and other chronic disease. You want to talk about inspiring!? 

These folks couldn't say enough about the crisis ongoing in the land of Lupus - in research, development, and delivery. The featured panelists were as follows: 

The Honorable Fred Upton, U.S. House of Representatives, Chairman, Committee on Energy and Commerce.

Congressman Upton is responsible for launching the 21st Century Cures initiative, a multi-year effort to bring researchers, industry, and patients together to speed up the discovery, development and delivery of life-saving cures. Not only that, but Congressman Upton has a very personal connection to lupus. His wife Amey has lupus, and his sister-in-law died of complications from lupus. He is as dedicated as they come - and it was an honor to bump into him at the reception. 

Francis Collins, MD, PHD, Director of the National Institutes of Health.

 Dr. Collins was so fired up about the current possibilities in the medical cures arena, you could hear the enthusiasm and passion in his voice when he spoke. He was great - just the kind of guy you want in charge of biomedical research to cure diseases like lupus! 

John J. Castellani
President & Chief Executive Offices
Pharmaceutical Research and Manufacturers of America

Mary Woolley, President & Chief Executive Officer, Research!America

And one of my favorite lupologists - Dr
Susan Manzi, MD, MPH, Chair, Department of Medicine, Allegheny Health Network

The panelists, along with moderator Chuck Todd, of Meet the Press

Here we are with our new friends Shawnda and her husband. Shawnda actually advocated that very day on Capitol Hill. She said most of the representatives she met with were very receptive to what she had to say about lupus, and to the 21st Century Cures Act. Here's hoping the legislation gets passed! 

You can check out video highlights from the event here, and stay tuned for Monday's "Pillbag pictoral" of my evening out. My pillfold had to go with me (I had to take my iron pill with dinner that night), but I didn't want to sacrifice style. Enter the chic, animal print Zoe pillfold. See you back here on Monday!

Wednesday, June 24, 2015

Make Great Light Giveaway - Winner Announced!


I’m excited to announce the winner of the Make Great Light giveaway today! Thanks so much for all of your entries, though it was so hard to pick just one lucky winner. It became quite clear from the entries submitted that many people are significantly affected by fluorescent lighting - so know that you are not alone. Many of you complained of headaches, fatigue, eye strain, dizziness, rashes, and overall feelings of malaise. These are exactly the symptoms that Make Great Light is trying to prevent. How wonderful that someone is doing something about it!

Without further ado, the winner of the Make Great Light 2015 Despite Lupus giveaway is...Latishia! Look for an email soon with instructions on claiming your filters, Latishia, and thanks so much for sharing your story.

For those of you who submitted an entry, but did not win, Make Great Light is offering a 20% discount on orders over $40 through June 30 with the code LUPUS20. This would be a perfect opportunity to approach your employer about the lighting in your workspace, and share with them the options that Make Great Light has for improving your work environment. It never hurts to ask (or educate), and your employer might surprise you by accommodating your needs. I know the folks at Make Great Light would be happy to discuss the various options available. And if you have success with your employer, be sure to report back. We love workplace accommodation success stories!

And a big thank you goes out to Make Great Light for sponsoring the contest, and for making such great lighting products. So glad there's a solution out there to combat that nasty fluorescent lighting. Maybe it should be KNOW Lupus, NO Lupus, and NO Fluorescent Lighting!

Friday, June 12, 2015

Managing Photosensitivity with Light filters + A Giveaway!

Now that summer is here, most of us are starting to spend more time outdoors. Hello, summer! Hello, sunshine! With that extra time outside, most of us know to take necessary precautions against UV exposure and glare with appropriate clothing, hats, eye protection and skincare in order to avoid a flare caused by the sun.

But for many, photosensitivity is a year-round, indoor issue, too: fluorescent lighting at home or in the office can cause fatigue, eyestrain, headaches, and more.  I distinctly remember having a “lighting” conversation with my employer years ago when I worked in an office. It’s a real issue - one that I’m so happy to see now has a solution!

Last month I was contacted by Make Great Light about their filters for fluorescent lighting, and I think their products sound really interesting. I haven’t tried the filters yet, but here's what they do:

*Eliminate all fluorescent light glare, which is a major cause of eyestrain

*Absorb UV radiation, which is a known Lupus flare-up trigger

*Output full spectrum light

*Color balance and correct light

Make Great Light has a cute, easy-to-understand video that gives a great overview. Check it out:


The filters come in two options – tube covers that slide over a traditional fluorescent light tube, which would be great for an office or basement, and panel overlays, which are a big sheet that can be placed on the bottom of a fluorescent fixture cover, or actually cut to size for any light fixture at home!

I’m happy to announce that Make Great Light has offered to provide either a set of tube filters or an overlay panel to a lucky Despite Lupus reader!

Here's how the give-away will work: 

Leave a comment or send an email to, and give us details about your flourescent light exposure - where in your home or work it happens, how many hours per day, how it affects you, and your email address. We'll accept entries between now and Sunday, June 21st. We'll then pick the winning entry, and announce the winner later that week. 

And for those of you eager to try the filters right away, Make Great Light is offering a 20% discount on orders over $40 through June 30 with the code LUPUS20. Check out their website here, and be sure to send us your winning entry!