LFA Message Boards Reach Milestone; More than 2030 Registered Users Are Online

Since their launch February 8, 2008, the LFA message boards have really taken off and now claim more than 2030 registered users. The boards provide an opportunity for individuals to reach out and seek answers to questions about living and coping with lupus, as well as support one another in an understanding and caring environment. To access our message boards, go online to http://messageboards.lupus.org/.

Discussion categories include Recently Diagnosed with Lupus, Lupus Treatments, Men & Lupus, and Coping with Lupus. Based on user feedback, two new categories were recently added: Disability, Insurance and Social Security Issues, and Lupus in the News. In addition, people from all over the world come to LFA’s message boards, from places as far away as Romania, Malaysia, the Netherlands, Iceland, Australia, and Germany.

When you have some time, visit http://messageboards.lupus.org/ and read some of the threads. Or better yet, join the discussion.

You’ll understand why it’s so important that we continue to raise the public's awareness about the devastating effects of this disease.

Looking for Suggestions for "Fatigue Busters"

Beginning with the Spring 2009 issue, Lupus Now magazine is going to debut a new feature called "Fatigue Busters."

As such, we want to print your answers to this question:

"What suggestions do you have to beat fatigue?"

Email your response to LupusNow@lupus.org. Make sure your answer is 30 words or less. Please include your first name and last name in the email, and write "Fatigue Busters" in the subject line of your email.

We'll print your responses in each issue.

Lupus Blog Spotlight: Keep Working, Girlfriend -- Women, Work, and Chronic Illness

Good morning everyone:

I would like to share a chronic illness blog with you. It is called Keep Working, Girlfriend: Women, Work, and Chronic Illness. It's co-written by 2 women -- Rosalind Joffe and Joan Friedlander -- both of whom live with a chronic illness.

Here's a little bit about Rosalind and Joan ... in their own words.

"First, we each live with chronic illness. That means we know the daily questions, the self doubt, the pain, the fatigue, and the fear.

We’ve learned how tough it can be to get out of bed each day and get a job done, whether you work for yourself or someone else, whether you make just enough to get by or your salary is fat, whether it takes a one hour commute or you never have to leave home.

We’ve experienced how difficult it can be to keep working, especially if you’re a woman living with a chronic illness.

Let’s face it. The work world is a tough place for women who are “healthy,” and it can feel impossible when you’re managing an illness, too."

If you have some time, swing by Keep Working, Girlfriend: Women, Work, and Chronic Illness and say hi to Rosalind and Joan.

That's the lupus scoop from my end.

Until next time, Wick

Fall Arrives Today ... Take a Walk for Lupus Now This Weekend

Morning everyone ... we had perfect weather here in the DC area this weekend. And today marks the arrival of fall, one of my favorite seasons. Fall also heralds the arrival of Walk for Lupus Now, with walks taking place all over the country.

As you know, funds raised from Walk for Lupus Now Walks support lupus research, education programs, and patient and family support services. You can help people with lupus in your community who need your help.

Here are some communities with Walks taking place this coming weekend.

• Birmingham, AL -- Saturday, September 27, 2008
• Indianapolis, IN -- Saturday, September 27, 2008
• Kansas City, KS -- Saturday, September 27, 2008
• Cleveland, OH -- Saturday, September 27, 2008
• Toledo, OH -- Saturday, September 27, 2008
• Portland, OR -- Saturday, September 27, 2008
• Memphis, TN -- Saturday, September 27, 2008
• New Haven, CT -- Sunday, September 28, 2008

If there is no Walk in your community, you can still help the LFA by setting up your own fund-raising page and participate in your own walk. For example, you could walk your local mall, hiking path or community park.

Together, we can find a cure.

Until next time, Wick

Lupus Foundation of America's "Healthy Aging & Lupus" Chat Transcript Posted Online

Morning everyone ...

Just a few lupus-related items to share with you.

"Healthy Aging & Lupus" Chat Transcript Posted Online

First, thanks to everyone who attended the "Healthy Aging & Lupus" webchat hosted by Dr. Ronenn Roubenoff on Wednesday. It went very well. A copy of that chat transcript has now been posted online.

And, we hope you will join us for the October 8, 2008 webchat. The topic is "Reproductive Health & Lupus," and it's hosted by Dr. Bonnie Bermas. Mark your calendars for that.

Fall 2008 issue of Lupus Now magazine is available

In the new Fall 2008 issue of Lupus Now, Positive Makeup introduces our readers to Miss Nicole Paxson, who was diagnosed with lupus at age 12. “I’m a firm believer that things happen for a reason,” she says. “Find out what that reason is, and find something you’re passionate about.” Nicole’s passion is her cosmetics company.

Ask anyone about their lupus medications and they’ll probably tell you it’s a true "love-hate” relationship. In this feature article, Tough Medicine acknowledges that, at one time or another, just about everyone with lupus has dreamed of tossing all their meds right down the drain.

In the feature article Baby Steps you’ll meet people who have completed their families in a variety of ways -- from traditional pregnancy to adoption to surrogacy when lupus prevented a pregnancy. The end result is what matters: a child to love, no matter how he or she became part of the family!

So, there’s your sneak peek at what’s in store in this fifth anniversary issue of Lupus Now. We hope you enjoy it!

LFA Message Boards Continue to Grow

As of this morning, there are 1964 registered users for the LFA Message Boards. Which is fantastic!! If you haven't joined the boards yet, you don't know what you're missing. Get in on the action! Join the message boards here.

That's your lupus scoop from my end. I hope everyone has a great weekend.

Until next time, Wick

Lupus Now magazine Needs You!

The Editor of Lupus Now magazine is seeking people to help with the Spring 2009 issue. The topics of the articles are:

• Conquering your anxiety about living with an unpredictable disease like lupus
• Loss of sexual desire
• The importance of appreciating your mate
• How to help other people understand what you’re going through with lupus

If one of these topics resonate with you, and if you think sharing your story might help others, please send your name and contact information, and a little bit about yourself, to lupusnow@lupus.org.

Interviews are done by phone and will take place at your convenience over the next three weeks.

Reminder: Healthy Aging & Lupus Webchat Today at 2 p.m. ET

The LFA welcomes Dr. Ronenn Roubenoff, who will serve as the guest expert for the Healthy Aging & Lupus chat.

We hope you can join us this afternoon. To do so, you can log in to the live chat here.

Participate in Purdue University's Health Communication Survey

A few weeks ago, I shared with you that Purdue University is working on a health communication study. Specifically, they’re looking to examine how information sharing behavior through online communities influences coping strategies among people with chronic conditions including cancer, diabetes, lupus, etc.

Purdue received a nice response after I posted their request (thanks to all of you), and they came back to me and asked if I wouldn't mind posting it again. It's their hope to try and reach those who were unable to participate the first time.

The study / survey is purely academic in nature and takes no longer than 5-7 minutes to complete. In the survey, they use the term "blog" to refer to any online activity where you might read or share information in communities such as blogs, internet forums, and discussion boards.

If you are interested in participating -- and regardless of whether you live in the United States, or around the world, you can take the survey here.

Purdue University hopes the findings of this study could lead to better management capacities of chronic diseases, as well as an increase in funding for research related to online communities.

If you choose to take the survey, thank you for doing so.

Until next time,
Wick

Lupus Living: Strong Teeth

Osteoporosis is a major health concern for millions of Americans, both women and men. For people living with lupus, the risk of bone loss and fractures due to bone loss is even greater because of lupus medications like corticosteroids, and because of the disease itself.

Caring for your bones through good nutrition, exercise, calcium / vitamin D supplements, and bone-growth medication is important if you’re at risk for bone loss. But there is one other part of your body that could be at risk: your teeth.

Besides depleting the calcium needed to keep teeth healthy, medications used to treat lupus can also trigger osteonecrosis of the jaw (ONJ), a rare condition that causes bone tissue to deteriorate and the jawbone to be exposed. However, catching symptoms of ONJ early can help prevent most pain and any serious loss or destruction of the jawbone. Here’s what to look for:

• Toothache
• Jaw pain
• Exposed bone
• Loose teeth
• Recurrent soft-tissue infections
• Numbness or feeling of heaviness in the jaw

If you’re taking an oral bisphosphonate, get regular dental checkups and alert your dentist to this and all other medications you’re taking. Be sure to tell your dentist about bleeding gums or any unusual feeling in your teeth. Although there is no cure for ONJ, it’s possible to experience some healing in your teeth and jaw with good oral care, use of antibiotics, and daily mouth rinses with antibiotic solutions.

Taken from the Fall 2008 issue of Lupus Now magazine

Join the Lupus Foundation of America's Webchat this Wednesday, September 17. "Healthy Aging & Lupus" will be hosted by Dr. Ronenn Roubenoff.

Reminder -- the Lupus Foundation of America's Webchat is this Wednesday afternoon, September 17, at 2 p.m. Eastern Time.

The LFA welcomes Dr. Ronenn Roubenoff, who will serve as the guest expert for the Healthy Aging & Lupus chat.

Dr. Roubenoff received his M.D. from Northwestern University in 1983, and trained in Internal Medicine and Rheumatology at the Johns Hopkins Hospital, where he was Chief Resident in Medicine (1986-87). In 1990 he completed concurrent fellowships in Rheumatology and in Clinical Epidemiology at the Johns Hopkins, receiving a Master of Health Science degree. He then trained in nutrition at Tufts University with Irwin Rosenberg, and in immunology with Charles Dinarello. He was Chief of the Nutrition, Exercise Physiology, and Sarcopenia (NEPS) Laboratory from 1997 to 2002, and Director of Human Studies, at the Jean Mayer USDA Human Nutrition Research Center on Aging at Tufts University from 2001 to 2002. He is currently Adjunct Professor of Nutrition and Associate Professor of Medicine at Tufts and Tufts-New England Medical Center. In September 2002, Dr. Roubenoff became Senior Director of Molecular Medicine at Millennium Pharmaceuticals, Inc., in Cambridge, MA, where he directed research on biomarkers and personalized medicine. In January 2007 he became Senior Director, Translational Medicine, at Biogen Idec, Inc.

Dr. Roubenoff has done pioneering work on the interactions of nutrition, exercise and hormonal and immune regulators of metabolism in aging and chronic disease, including rheumatoid arthritis, osteoarthritis, and HIV infection. He is an internationally recognized authority on sarcopenia, cachexia, and wasting. He has published over two hundred papers in the medical literature as well as writing for lay audiences. He is co-author of a New York Times Bestselling book on exercise and nutrition treatment of arthritis. Dr. Roubenoff has served on many NIH study sections, WHO committees, Animal Care and Use and Institutional Review Committees, and as a reviewer for journals, foundations, and charities. He has won multiple awards, including membership in the Alpha Omega Alpha and Delta Omega honor societies; Fellow of the American College of Physicians and the American College of Rheumatology; the American College of Rheumatology Senior Scholar Award; Tufts University Distinguished Faculty Award; Teacher of the Year at Johns Hopkins Medical School; and the Oliver Smith Award for Extraordinary Service and Caring at Tufts-New England Medical Center.

You can submit a question in advance here.

We hope you can join us Wednesday afternoon. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Visit here to read the LFA's previous chat transcripts.

How To Handle Stress

Say goodbye to that potentially flare-inducing demon with the "Quick Release" -- a calm, cool and very collected exercise developed by Dr. Robert Phillips. This easy technique is great for reducing overall tension in your body.

Step 1

Get yourself into a comfortable position, whether on a bed, in a chair or even standing up. Close your eyes.

Step 2

Take a deep breath and hold it. At the same time, tense your muscles -- starting with your arms and fists, followed by your legs, abdomen and other body parts. Tense as many muscles as you can, but don't strain yourself or engage muscles that may be sore or uncomfortable. Do this for about 6 seconds. No need to actually count.

Step 3

Let your breath out in a "whoosh" and let your body go limp, like a rag doll. Keep breathing rhythmically and comfortably for what feels like 20 seconds. Again, just estimate the time.

Step 4

Repeat this cycle 2 more times.

Step 5

At the end of the third repetition, keep your eyes closed and just relax for one minute. Focus on your breathing and allow yourself to relax even more.

This entire exercise takes less than 2 minutes. Use it anytime something (or someone) stresses you out. Even better, practice it 5 or more times throughout the day for overall tension reduction.

Taken from the Fall 2004 issue of Lupus Now magazine

Fall 2008 Issue of Lupus Now Hitting the Streets

In the new Fall 2008 issue of Lupus Now, the Lupus Living section reveals how you can keep your skin happy, healthy skin, despite winter’s freezing temperatures, low humidity, and wind exposure. And is your worrying habit sometimes out of control? We offer you some tips on how to stop this cycle of worry. Besides the bones of your arms, legs, fingers and toes, there’s another part of your body that could be at risk for bone mass loss. Do you know what it is? Plus, Part 2 of the facts and fictions of environmental lupus triggers can be found in this issue.

The Wellness section has important information to help you prepare for an ER visit when you have lupus; the key is having all the information related to your lupus ready to hand over to emergency room staff when you arrive. And in the second part of the series on being newly diagnosed we provide answers to some of the more complex concerns that arise over time.

Positive Makeup introduces our readers to Miss Nicole Paxson, who was diagnosed with lupus at age 12. “I’m a firm believer that things happen for a reason,” she says. “Find out what that reason is, and find something you’re passionate about.” Nicole’s passion is her cosmetics company. With products named for butterflies, like Painted Lady Powder and Monarch Crème Foundation, Nicole Paxson Cosmetics is starting to take off across the country. Nicole says she chose to embrace lupus rather than deny it. “I still struggle with the ups and downs, whether it’s the lupus or hormones or the normal life of a young woman. But I have something that I worked really hard on and something I’m proud of, and now I have a direction in my life,” she says.

Ask anyone about their lupus medications and they’ll probably tell you it’s a true "love-hate” relationship. In this feature article, Tough Medicine acknowledges that, at one time or another, just about everyone with lupus has dreamed of tossing all their meds right down the drain. There are many reasons people stop taking their meds: some haven’t truly accepted the fact that lupus is a chronic illness; some can’t afford to continue to buy the prescription, some find that the medicine is used up before our insurance will allow a refill; some find the side effects are worse than the symptoms the meds are supposed to help. In these interviews you’ll find that a little attitude adjustment can go a long way.

You may have read that lupus pregnancies are considered high-risk. That’s not because there are always complications, but because there could be problems, and it’s better to be safe than sorry. In the feature article Baby Steps you’ll meet people who have completed their families in a variety of ways -- from traditional pregnancy to adoption to surrogacy when lupus prevented a pregnancy. The end result is what matters: a child to love, no matter how he or she became part of the family!

A big part of growing up is taking responsibility for your own health -- and that’s saying a lot when you have a complicated disease like lupus. Making the transition from child to grownup is the topic of Teen Talk in this issue, as hear how four young people with lupus approached the transition from pediatric to adult care.

Finally, this is the issue in which we give you the results of the recent Reader Survey. Find out what your fellow readers think about the magazine, its topics and what made the Top Ten List for both the medical and general topics.

So, there’s your sneak peek at what’s in store in this fifth anniversary issue of Lupus Now. We hope you enjoy it!

Lupus Foundation of America Seeking Feedback from People with Lupus

The Lupus Foundation of America (LFA) is working to improve the way in which we serve people with lupus. We would appreciate 20 minutes of your time so that we can learn the issues most important to you, and receive your views on how well LFA is meeting your needs.

The deadline for taking the survey is Thursday, September 11, 2008.

http://donate.lupus.org/2008survey

Thank you for helping the LFA.

Human Genome Sciences Completes Enrollment for Lymphostat-B Phase 2 Clinical Study

Human Genome Sciences, Inc., of Rockville, Maryland, has announced completion of enrollment for the second of two phase two clinical studies of Lymphostat-B, a potential new treatment for lupus. "The LFA congratulates officials of Human Genome Sciences, Inc. for passing this important mile marker," said Sandra C. Raymond, President & CEO of the Lupus Foundation of America. "Millions of people worldwide suffering from lupus have waited nearly five decades for safe, effective and tolerable treatments to manage lupus."

"We look forward to reviewing the results of these trials when they are completed in 2009, as well as data from trials of other promising treatments in the near-term pipeline," said Raymond. "This is an exciting time in lupus drug development and we are encouraged that physicians will soon have new tools to managing this devastating and life-threatening disease."

Read the Human Genome Sciences Press Release.

Fall Is Almost Here … Why Not Take A Walk for Lupus Now?

Morning everyone ... hope you had a good Labor Day weekend, for those here in the states.

Wow, it's already September. This summer sure flew by. In just a few short weeks, it's going to be fall -- which is my favorite time of year. Fall is perfect for getting outside for some fresh air, and stretching your legs.

Experts say one of the easiest ways to get exercise is to walk, 30 minutes a day, several days a week. So why not take a walk, and help the LFA find a cure for lupus?

Walk for Lupus Now season is upon us, with walks taking place all over the country. Funds raised from Walk for Lupus Now Walks will support lupus research, education programs, and patient and family support services. You can help people with lupus in your community who need your help.

Many Walk for Lupus Now participants have lupus, or are family, friends or caregivers to someone who has lupus. People often walk "in honor" of a friend or family member who has lupus or "in memory" of someone who lost his/her battle with lupus.

See if there’s a Walk for Lupus Now walk in your community. Or one that’s close by.

If there is no Walk in your community, you can still help the LFA by setting up your own fund-raising page and participate in your own walk. For example, you could walk your local mall, hiking path or community park.

Together, we can find a cure.

Until next time, Wick