Bone Density Diseases Linked To Disease Duration

Wanted to update you on the findings of a recent study published in Arthritis & Rheumatism. The results of this study linked disease duration and the occurrence of osteoporosis and osteopenia in children with systemic lupus erythematosus (SLE). Studies previously done in adults had shown this relationship. This is the first study regarding children on this topic.

The most interesting find is that osteoporosis and osteopenia are more closely associated with disease duration than with cumulative corticosteroid dose. These findings present yet another worry for children suffering from SLE.

For those of you that aren’t familiar- osteoporosis is a disease in which bones become more fragile and can break, while osteopenia is lowered bone density that is not as extreme as osteoporosis

CITATION:
Compeyrot-Lacassagne S, et al. Prevalence and etiology of low bone mineral density in juvenile systemic lupus erythematosus. Arthritis Rheum 2007;Jun;56(6):1966-73.

Blogathon 2007

Talk about irony at its finest ... I’m blogging to tell you about Blogathon 2007!

Blogathon is a blog marathon in which people update their blog every half an hour for 24 HOURS! This fund-raising initiative began back in 2001. At its peak, Blogathon has raised over $100,000 for 71 charities.

This year, several individuals have selected the Lupus Foundation of America, Inc. as their designated organization. Check out Blogathon 2007, and support those that support the LFA.

Blogs away!

Combined Federal Campaign Code

Hey everyone!

Well, it’s that time of year… the Combined Federal Campaign (CFC) season is drawing near!

What is CFC you ask? CFC is an annual workplace campaign in which federal civil, military and postal employees can support eligible non-profit organizations that provide health and human service benefits.

Interested in participating? It’s simple! All you have to do is designate the Lupus Foundation of America, Inc. (LFA) on your CFC pledge card. Just beware, this year the LFA is sporting a new agency code: #10566.

The LFA is listed in the Combined Health Charities federation for National Voluntary Health Agencies. Your contribution will be used to support LFA research, education, and support programs. You can learn how your donations are used here.

On behalf of the 1.5 million Americans with lupus, we extend our sincere appreciation and gratitude for you generous and loyal support.

Bicycling to Raise Lupus Awareness

Good morning … my name is Robert York and I work in the Marketing & Development department here at the LFA. As you might expect, there are fund-raising events taking place all around the country which ultimately benefit LFA. I want to take a moment to shine a spotlight two of them.

Three courageous individuals -- Geoff Thomas, and James Mason & Dylan Trakas -- are biking across the United States to raise money and awareness for lupus.

Australian Geoff Thomas is doing what is called "the four corners tour." He’s cycling the four corners of the U.S. in what he says is the first trip of its kind.

This mission is personal for Geoff. In 2003, he was diagnosed with a form of lupus that affects his skin.

Geoff began his journey, Bike USA 2007, on April 28. In less than 50 days he completed his first lap: New York to Washington state. Now 82 days into his journey, Geoff has biked a total of 5,284 miles (or 8,455 km.), and he's just south of Phoenix, Arizona. Visit Geoff’s website, www.bikeusa2007.com/, where you can track his progress and make donations as he travels around the country.

The other two bikers are Dylan Trakas and James Mason, both recent graduates of Sewanee University, in Tennessee. They expect to spend approximately three months biking 4,000 miles from Bellingham, Washington to Charleston, South Carolina. Their goal is to raise $50,000 for the Lupus Foundation of America, Inc. (LFA), as well as to increase public awareness about this disease.

Dylan and James' mission is also personal -- Dylan's mom struggles with lupus.

They began their journey, Across the lupUS, on June 3. They too have established a website, http://www.acrossthelupus.com/. You should check it out; read their journal entries, track their progress and if you can, donate to their cause.

We truly appreciate the efforts of Geoff, Dylan and James -- and everyone else -- who are helping the LFA look for a cure for this debilitating disease. With their help, and yours, we'll find a cure that much quicker!

Protect Yourself from the Summer Sun

Summer brings longer, hotter days, more sunshine and a renewed focus on sun protection. As you know ... ultraviolet (UV) rays from the sun can damage unprotected skin and lead to serious health effects, including skin cancer. People with lupus have extra reasons to take precautions.

How to Protect Yourself

• The most effective way is to avoid sun exposure as much as possible, especially midday (approximately 10 a.m. to 4 p.m.) when UV rays are strongest.



• Don’t let your guard down on overcast days. UV rays can penetrate clouds. Get in the habit of putting sunscreen on every morning, regardless of how the weather looks.



• Covering up is a good way to protect yourself. Adequately protective clothing can be effective. To ensure you’re protected, add high-necked shirts with long sleeves to your wardrobe. Apply sunscreen to skin that’s still exposed.



• Sunscreen comes in many forms. Whatever you use, apply it liberally and throw out expired products. To ensure adequate protection, buy the strongest sunscreen available and apply a "reasonably thick" layer at least 20 minutes before you go outside. Reapply sunscreen every 2 hours, especially after sweating, swimming or rubbing your skin with a towel.

adapted from Playing it Safe in the Sun, Summer 2007 Lupus Now

Chattin' about Chats

Hey everyone … my name is Wick Davis and I work on the LFA’s Website. One of my areas of responsibility, which I share with our Education & Research department, is our monthly Webchats.

Topics for Webchats are determined by a few things … what’s seasonal, or timely or appropriate. When visitors come to the LFA Website, what kinds of questions are we getting, whether in our Ask the Experts area or to our general information email address? Are there similar questions or trends that we’re noticing?

If we notice there are patterns or interest levels in certain topics emerging, we meet to determine if a Webchat is the most appropriate way to address the topic. In other instances, we talk with the volunteers on our Medical-Scientific Advisory Council to see if there are “hot topics” we should address.

Once a topic is determined, we then try to book one of the most notable rheumatologists or whatever the appropriate specialist might be in a particular area to host the Webchat.

Typically, the LFA hosts a Webchat on a Wednesday afternoon each month, usually around 3 p.m. EDT. People often ask … why 3 p.m.? Why not earlier or later in the day? There are 2 reasons for that.

1. Since we have people joining our chats from across the country, we settled upon 3 p.m. EDT because we needed a time that could accommodate the most people in all time zones.
   
   
2. We’ve found that most of our guest speakers have more availability in the afternoon, than in the morning. And evenings are usually not an option for them. Like everyone else, our guest speakers have families and other commitments. And like our chat attendees, our guest speakers are located throughout the U.S.

This afternoon, Dr. Gary Gilkeson, a Professor of Medicine/Microbiology and Immunology at the Medical University of South Carolina and Chief of Rheumatology at the Ralph H. Johnson VA Medical Center in Charleston, will host a Webchat on Ethnicity & Lupus. It should be an interesting discussion.

You can log in to the chat here.

View our schedule of upcoming chats here.

We hope to see you at one of our chats.

Have you read the latest issue of Lupus Now magazine?

Hi, I’m Jenny Allan, the editor of Lupus Now. This is my first entry in the new LFA blog, and fortunately I get to talk about one of my favorite subjects -- the magazine!

I have to tell you the brand-new summer issue is a big success so far. Check out some of these comments:

• "Do you employ psychics at Lupus Now? I've just received your Summer 2007 issue and nearly every article had great information I needed to see at this period in my life."


• "Thank you for the great articles in the current issue. Very relevant to this time of year. Great article on fluorescent bulbs. I read every page, front cover to back cover. Great work."


• "The Lupus Now Summer 2007 magazine really captured my attention with several articles pertaining to my situation. I was particularly interested in two articles: "Vacation Inspiration" and "Kidney Disease and You."

So that’s me bragging. I promise, it won’t get any worse than that! Now, what else can you find in the summer issue?

Besides the three articles mentioned above by the fans, one really insightful piece is on dating and new relationships. How, and when, do you tell someone you’re dating that you have lupus? You’ll hear from ladies facing this questions, AND from the guys who love them enough to get past the whole unpredictability of lupus thing. Lots of happy endings in this story!

Then we have a great article that takes on a question we hear all the time: Is there a lupus diet? The simple answer is, “No.” But there are lots of ways you can help, or hinder, your lupus by what you eat, and take -- and, guess what? Herbs and dietary supplements aren’t necessarily okay!

Our Teen Talk column features a letter from a 22-year-old college student with lupus, looking back at all the ways she didn’t take care of her health during her freshman year. If you’re in college, or starting soon, or one of your children is, you need to read this one.

Our other regular columns have great information, as well: Ask the Experts answers the burning question of whether fluorescent lights really are bad for lupus, as one reader mentioned above, as well as whether the long-time use of prednisone can lead to type 2 diabetes; and Ask Dr. Paul gives some suggestions on how a guy with lupus can respond to this common and frustrating comment: "Oh, I thought lupus was a woman's disease."

Lupus Now comes out three times a year -- Spring, Summer, and Fall -- and we don’t want you to miss a thing. For just $25, it’s a bargain, so go sign up now!

LFA Rides Social Networking Wave

Social networking sites have exploded in popularity all around the world. From sites created for different ethnic groups to sites created for students, people use social networks to connect with current friends, to make new friends, and to rally around a particular cause(s). The Lupus Foundation of America has jumped on the bandwagon!

The LFA has its own MySpace page, www.myspace.com/lupusfoundationofamerica. In addition to the links of resources, you can see the LFA already has a growing list of friends, including Malcolm-Jamal Warner (Theo from the Cosby Show), Tomiko Fraser Hines (Maybelline New York model and LFA spokesperson), and Leslie Hunt (a top 20 American Idol finalist in 2007). There are also a number of people who support the LFA, have lupus or know someone one with lupus and are listed as the friends on the MySpace page.

LFA also has an entry in Wikipedia. You can view it here http://en.wikipedia.org/wiki/Lupus_Foundation_of_America.

YouTube is now home to the LFA’s videos and public service announcements. This video debuted at the LFA’s annual gala in May 2007.

For those not on MySpace, the Lupus Foundation of America also has an official Facebook group. We use the Facebook group as another way to connect with people in schools and different regions. And not only does the LFA have a group, but we also belong to several lupus awareness groups.

Facebook has allowed the LFA to spread awareness about the seriousness of lupus thru “virtual word of mouth.” Whether posting information about upcoming chats, making people aware that the latest issue of Lupus Now is available, soliciting personal stories, or looking to sign up e-Advocates, Facebook has been a great tool for our organization.

In addition to the Facebook group, there is an official Facebook cause (Lupus Foundation of America, Inc.). The Facebook cause lists the mission of the LFA (To improve the diagnosis & treatment of lupus, support individuals & families affected by the disease, increase awareness of lupus among health professionals & the public, & find the causes & cure.). One great feature of the Facebook cause is that it allows people to invite their friends to join the cause. To date there are 192 members of the Lupus Foundation of America, Inc. cause on Facebook.

By joining social networks such as these, we hope to increase the general knowledge about the disease, and have more people join us in our search for the cure.

Come join us!