Friday, July 31, 2015

New Lupus Study for Lupus Nephritis - Think your lupus kidneys would be interested?

I just heard about a new lupus study being conducted, and I thought I'd share. It's targeted toward lupus nephritis, or kidney involvement and inflammation due to lupus. The study is testing the effectiveness of a new investigational immunosuppressant drug developed by a canadian-based pharma company. Can't have too many drugs specifically designed to treat lupus, now, can we?

Personally, I developed kidney involvement pretty early on, which is why I started another drug called CellCept years ago. As you may remember, CellCept works wonders for me, and I've been on it twice - once for a period of three years, and most recently, for a year and a half and running. It continues to work well for me, and although I still have daily fatigue that requires a nap, and experience joint pain and swelling every once in awhile, on a day to day basis, CellCept keeps me pretty darn healthy.
Image result for cellcept
That's why this study is particularly appealing, because I believe that you can remain on CellCept and Prednisone (which I'm also on) during the study. When I asked for clarification on this point, I was told that because those two drugs often represent a standard of care for lupus treatment with kidney involvement, volunteers who place in the placebo group will still be getting normal treatment, even if they're not getting the study drug. Now that's a study that puts my mind at ease!

The study includes multiple visits to drug clinic trial sites, and the sites are located in North Carolina, Michigan, Florida, Tennessee, Texas, California, and Massachusetts.  The clinics take volunteers from up to 200 miles away, and volunteers with transportation issues may be able to work something out with the clinic if they’re qualified. Being in the Washington D.C. area, I'm not able to participate, but I'm hopeful some of you can.

Here's all the info you need to get started. Click here to see if you're pre-qualified, and to determine if the study is a good fit.

The study is being conducted to demonstrate the efficacy and safety of the investigational immunosuppressant when taken orally twice daily when compared to placebo. The study will last about twelve months and consist of about 13 visits to the study clinic during that time.

Volunteers who participate may or may not benefit from taking the study drug, but will be contributing to research that may well help those suffering from lupus nephritis in the future. Also, they will have additional tests and clinic assessments than they would normally have in the course of their treatment, which may allow their own doctors to more thoroughly assess their condition.

As with any research study, your private medical information will be protected if you choose to participate in the study.


Wednesday, July 29, 2015

Charity of the Month: UCSF Foundation to benefit lupus support groups. Hooray!

We're thrilled to be partnering with the pediatric rheumatology department of UCSF as the recipient of the Pillbag Charity of the Month! 

Now through the end of 2015, all proceeds will go directly to the UCSF Foundation, to benefit the lupus support groups held in the pediatric clinic at UCSF. The UCSF Foundation seems like a perfect fit for a pillbag fundraiser, as we're happy to support the educational programs and patient support that the pediatric clinic provides. 

Stock up on a new pillfold today and support the cause. 
Check out our latest designs here, and thank you for your support!

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.