Monday, July 20, 2015

Naptime in Valencia, Spain: my kind of city, and very lupus-friendly!

I've always known I had Spanish roots, but based upon this latest article, it looks like Despite Lupus headquarters would feel right at home in Valencia!

Snippets of the article are below, but you can read the entire piece here:
A Spanish mayor has become the first in the country to issue a proclamation creating an official afternoon nap time for the entire city. (!!!!)
Mayor Joan Faus Vitoria of Ador in Valencia declared 2 to 5 p.m. as the official time for the city’s residents to take their afternoon siestas.
The edict asks residents to keep quiet during the siesta hours and the mayor recommended children be kept inside to prevent noise from traveling into open windows.
Vitoria said there will be no penalties for violations, and the edict should be treated as “merely a suggestion” rather than an “obligation.”
A study published in the Endocrine Society’s Journal of Clinical Endocrinology & Metabolism in February espoused the health benefits of an afternoon siesta.
“Our data suggests a 30-minute nap can reverse the hormonal impact of a night of poor sleep,” said study author Brice Faraut of the Universite Paris Descartes-Sorbonne Paris Cite in France. “This is the first study that found napping could restore biomarkers of neuroendocrine and immune health to normal levels.”

We at DL couldn't agree more!!!

Wednesday, July 15, 2015

Staying sun-safe this summer: with or without LUPUS!

Several weeks ago, the folks at Baylor College of Medicine sent the following article to me. I thought the middle of summer was the perfect time to post.

Having just finished up an 11-day trip to the beach (...I mean, the shore), and plans to go to the pool just about everyday this week, sun protection and skin care is very top of mind. Personally, I've found that a baseball cap does very little to protect my face. I take my wide-brimmed straw hat (compliments of my in-laws, thank you very much) everywhere! It went to the shore, it went to Sanibel earlier this year. I don't go to the beach or pool without it!

And while I've never had recurring rashes due to lupus, I did have a lupus rash caused by the sun a few years ago for which I sought treatment. It was on my decolettage (upper chest), and for that reason, I should be wearing one of these cute little SPF tops below when I head to the pool. I hadn't really researched them until writing this post...but now that I see how cute they can be, I think I might just snap one up for the rest of the season!

Jessica - Swim Crop Top

kanu surf

Here are some more links about sun-safe clothing that I thought were interesting. Here's one about fabrics and fibers - so you can determine just how protected you are by that cover-up/t-shirt/beach attire. 

And here, what I've found, to be the more fashionable SPF protection clothing lines - ParasolMott 50, and Kanu Surf on Amazon. Coolibar looks decent, too, and a friend of a friend started Eclipse Couture, which also has great stuff. So many good options!

You can read the entire Baylor article here, or see the snippets below: 


“We all know SPF is important, but it extends beyond that,” said Dr. Ida Orengo, professor of dermatology and director of the Mohs/Dermatologic Surgery Unit at Baylor College of Medicine. “Diet, clothing and familiarity with your skin type all factor into sun protection.”

Diet can play a role in preventing skin cancer, Orengo said. The following items have been proven to reduce the growth of malignant cells and skin tumors: 

Omega-3 fatty acids (Salmon is my favorite, says Despite Lupus)
Green tea
Resveratrol (an ingredient in red wine)

“It’s important to remember that we do need sun,” she said. “When sun hits the skin it transforms vitamin D into its active form. We need about 10 to 15 minutes of daily sun exposure for proper vitamin D levels. Vitamin D supports healthy brain, heart and immune system function.”

For long days out in the sun you’ll need more than sunscreen. Orengo suggested tossing out the baseball caps with ventilation holes and opting for a hat with no holes and at least a 3-inch brim.

“Consider buying lightweight clothing that properly covers and protects your body from the sun’s rays,” she said. “Many outdoor stores now sell sun-protective clothing. There also are products that will add SPF to your own clothing.”

Another tip to protecting your skin is to know your own skin type, said Orengo. The Fitzpatrick scale is a numerical classification system that recognizes how varying types of skin respond to sun exposure. Orengo said dermatologists are familiar with the scale but individuals should also take time to understand their own risk. . 

Type 1: burn all the time
Type 2: burn every time, then turns into a light tan
Type 3: burn but get a good tan
Type 4: sometimes burn, always tans
Type 5: rarely burns, always tans
Type 6: never burns, always tans

“Types 1, 2 and 3 are more likely to get skin cancer,” she said. “Types 4, 5 and 6 can get skin cancer, but it’s less likely. They should still protect themselves from the sun.”

For some types of skin, sunblock may work better than sunscreen because it physically blocks ultraviolet radiation from penetrating the skin. This is especially true for people who have sensitive skin, Orengo said.

Regardless of your skin type, Orengo said skin health should be everyone’s concern and following these tips, as well as seeing your doctor regularly for skin checks, is a good way to prevent skin cancers.

Saturday, July 11, 2015

Shannon Boxx and lupus - An anomaly on the field, and an advocate we're so happy to have!

I had the pleasure of hearing Shannon Boxx speak a few years ago at an annual LFA Gala. She was impressive back then, and now with her fourth (and most likely final) Women's World Cup under her belt, she will go down in history as one of soccer's accomplished and admired athletes. That she also has lupus and Sjogren's disease makes her story that much more remarkable!

The following are two great articles about Shannon Boxx, with snippets of her interview below. I love that she's ready to turn her focus to lupus advocacy and awareness. What a fabulous face of lupus! (And the fact that she attended my alma mater, the University of Notre Dame, makes me so proud!)

Here's the article the folks at Healthline sent along for me to post, and here's an Sports Illustrated article that my brother-in-law (also an ND grad) forwarded to me. And here are snippets below:


“We look normal,” Boxx says, “I seem normal. I don’t look sick. I have a feeling there are probably a lot of people that are like, ‘Oh, she must be done with it’ or ‘It must not be that bad because she’s able to do what she does.’ I don’t want that stigma to be that that’s what lupus is. I want people to look it up and to realize that it is a life-threatening disease and there are people that can barely walk or are having organ failure.”

Though [Boxx's] friends and family have been a huge support, Boxx credits her medication as the main reason she can still compete at the top level. When her prescription ran out last fall and she couldn’t immediately get a refill, “my joint pain was huge. I couldn’t lie down on my right side because my shoulder hurt so bad. I couldn’t open a jar. I couldn’t actually hold on to a fork eating,” she says. “Those little things have nothing to do with being an athlete at that point.”


Think she'd like a pillfold?! Tell me which design you think I should send Ms. Boxx in the comments, or shoot me an email at Here are the options. And Ms. Boxx, if you'd like to tell us yourself which Pillbag design you'd like, feel free!

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!