Road to a Lupus Cure

Band Together for Lupus Awareness This May

noreply@blogger.com (Sophie - LFA) — Tue, 01 May 2012 13:00:00 +0000

New research has shown that most Americans, 59 percent, know little or nothing about lupus and its devastating impact. This May for Lupus Awareness Month, the Lupus Foundation of America (LFA) is urging individuals nationwide to Band Together for Lupus Awareness® to improve understanding of lupus, an unpredictable and sometimes fatal disease that affects an estimated 1.5 million Americans.

This year, the LFA is asking the public to Put On Purple for lupus awareness by wearing purple and telling people why they are showing their support for all people affected by this disease. Put On Purple Day will take place on Friday, May 18, 2012, and is one of many programs taking place during May.

The LFA’s Lupus Awareness Month activities, which include social media, online, and grassroots components, will also empower individuals, organizations, and companies by providing a number of tools and resources so they can educate their communities about lupus. Tools range from fliers, to Web and banner ads, and daily facts about lupus. Check out our Awareness Kit at www.lupus.org/awarenesskit.

There are many ways the public can Band Together for Lupus Awareness such as:

Listen to and share new podcasts with lupus experts.
Share their lupus story on Lupus Voices Across America at www.lupusvoices.org.
Include an article about lupus in their company newsletter or on their Web site.
Post fliers in their community or around their office.
Post a Web banner on their personal or company Web site linking to the LFA/Lupus Awareness Month activities.
Distribute purple wristbands to friends (available for sale at www.shoplupus.org).
Participate in Put On Purple Day on Friday, May 18 -- encourage friends to wear purple proudly on this day and tell people why.
Share lupus facts with their networks throughout the month of May via their social media pages.

Are you blogging about Lupus Awareness Month? Leave a comment with a link to your blog post below!

For more information on how to get involved and raise awareness this May, visit the LFA’s Web site, www.lupus.org or leave a comment!

What are you doing next month?

noreply@blogger.com (Sophie - LFA) — Wed, 25 Apr 2012 16:12:00 +0000

May is Lupus Awareness Month! Research shows that most Americans know little or nothing about lupus and its devastating impact on millions of people. You can change that! BAND TOGETHER FOR LUPUS AWARENESS to help the Lupus Foundation of America fight this unpredictable and sometimes fatal disease and show support for those who suffer from it.

Start Planning Your Lupus Awareness Month Activities Now!
Check out our Awareness Kit for fliers, Facebook and Twitter images, and other materials to build awareness of lupus within your community and among your family and friends.

Will you walk with us?

noreply@blogger.com (Sophie - LFA) — Wed, 18 Apr 2012 16:32:00 +0000

Beverly, a Walker from California, shares her lupus story and why she joins the Lupus Foundation of America and Walk for Lupus Now® below. Sign up for a Walk in your community at www.WalkforLupusNow.org.

Beverly from California

I was diagnosed with lupus while serving in the United States Air Force. I was a flight test engineer flying as a back seater in F-16s and T-38s. After a long, hot summer in the desert I noticed a rash across the bridge of my nose and cheeks, some raised bumps on my fingers, increasing joint pain, and severe fatigue after each flight. I was immediately instructed to have the flight surgeon look at me. After a gamut of blood work and tests they confirmed it was definitely lupus, and that it had already gone to some of my major organs.

I was terrified. The only other person I'd ever heard of having lupus was my cousin, who died from complications of this disease less than a year after her symptoms showed up.

However, I'm thrilled to say, 5 years later, I'm doing very well. I was blessed with an amazing rheumatologist and support system. I believe lupus can be a very isolating disease. It's hard to explain to someone who does not have it, what it's like on those really bad days. My countertop looks like a small pharmacy. The list of drugs I have to take just to feel *okay* is overwhelming.

I have participated in WALK FOR LUPUS NOW® for four years. One of the amazing things about the walk is that it reminds you that you are not alone. There is a whole community of people who understand how you feel and what you’re going through.

We need more resources. We need more research. We NEED a CURE.

So I walk. I walk for research. I walk for support. I walk for my daughters. I walk in my memory of my cousin. I walk for the hope of some day finding a cure, so that I may once again, be LUPUS FREE.

Please join me and sign up today for a WALK FOR LUPUS NOW® event in your community. Together, we CAN FIGHT this terrible and life-altering disease.

Loss and Hope: Find Your Balance

noreply@blogger.com (Sophie - LFA) — Fri, 30 Mar 2012 16:14:00 +0000

The other day I listened to a teleconference on the results of a nationwide survey of more than 950 people in the lupus community—502 people with lupus, 204 supporters (family members or friends) of people with lupus, and 251 rheumatologists. The survey was designed to “evaluate the daily and long-term impact of lupus on health, family relationships, career, and quality of life, and to identify potential gaps in communication.” The results showed that “communication challenges are significant.” You can say that again!

87% of people with lupus in the survey admitted minimizing their pain and other disease-related concerns to avoid upsetting their families, and 52% reported that they minimize their symptoms when they talk to their physician. Yet, 72% of the rheumatologists surveyed were not aware that their lupus patients are minimizing their symptoms!
76% of the physicians believed it is the severity of lupus symptoms that has the most impact on people with lupus, but only 59% of the people with lupus agreed with that.
51% of those with lupus reported arthritis/joint pain as the most prevalent symptom to affect them on a daily basis, only 35% of doctors ranked such pain as highly prevalent.

Regrettably, the communication disconnect is happening with family and friends, too:

46% of those with lupus said they experienced fatigue on a daily basis, yet only 22% of their supporters saw this as a prevalent symptom.
75% of those with lupus said that family and friends think they (the person with lupus) can do more than they actually can; 80% said their family and friends think lupus can be improved by eating better or exercising more; and 67% said their family and friends believe they can identify with living with lupus.
78% of supporters describe themselves as “very supportive” of family and friends with lupus, while 52% of those with lupus felt that way.

I have a theory. I hypothesize that these disconnects may be due to our own unwillingness to show weakness. I mean, who wants to constantly be asking for help? Or talking about the pain? Or admitting that we forgot—again? More than half (57%) of those with lupus said the disease significantly impacted their self-worth. Do you really think we want to add to that by openly cataloging our every complaint? I for one am ready to admit it: I don’t share even half of what’s bothering me. And that’s not good.

It’s just that I don’t think people without lupus understand how hard it can be to let go of what we can no longer do. It’s been 19 years since I was diagnosed with lupus, and still every day I feel loss. I was angry for so long and I didn’t even know it. But that is not a healthy frame of mind, especially when you have lupus—a disease that is activated by stress. Indeed, the occurrence of stressful events has been linked to disease flares. The therapists and psychologists tell us it’s okay to grieve for our losses. But eventually we must focus on what we can do.

But there’s a remarkable thing about people with lupus—one that will always show up on any survey because it is a hallmark of this mysterious and complex disease: More than half (56%) of people with lupus reported feeling hopeful or optimistic.

As for me—well, to help make up for those things that are out of my reach now, in the past two years I have started to do some brand-new things, which helps me not miss the old things as much. I’m gradually sharing my lupus story in this blog. I started a coloring card business that will debut soon at designs2color.com (motto: you are never too old for crayons!), and began dating a wonderful (younger!) man who makes me laugh all the time, but also accepts me as I am. And because I used to be a wild child, I am learning to play the electric bass guitar. Take that, lupus!

Visit the Lupus Foundation of America's Web site for the rest of the survey’s findings.

Sneak Peek of Spring 2012 issue of Lupus Now Magazine

noreply@blogger.com (Sophie - LFA) — Wed, 14 Mar 2012 18:09:00 +0000

Maurissa Tancharoen Whedon is behind the successes of hits like Fox’s Dollhouse, and the Web series, Dr. Horrible’s Sing-Along Blog. But the cover story of the Spring 2012 issue of Lupus Now magazine is not about that. Don’t miss this exclusive interview on Mo’s life with lupus, and how the love and support of family and friends makes all the difference.

There is much uncertainty and misunderstanding about the many ways that the lungs and pulmonary system can be affected by lupus. Learn about warning signs you should never ignore, and much more, in our feature, “Breathless.”

One of the most upsetting ways that lupus can affect the body may be hair loss—especially for women. Whether due to medication side effects or the effects of the disease, hair loss is common and frustrating. We talk to hairdressers and offer solutions in “Hair Care.”

In The Mourning Bride, English playwright William Congreve (1670–1729) wrote, “Music hath charms to soothe the savage breast/To soften rocks, or bend a knotted oak.” From Bach to Beyoncé, find out how your favorite kinds of music can soothe the stresses and strains of lupus in “Staying in Tune.”

When you see the word “biomarkers,” what do you think of? It’s a hot topic among lupus researchers, not least because of the importance of biomarkers in clinical trials of new treatments and therapies. Find out how the LFA supports the groundbreaking work of today’s lupus researchers in “Biomarkers of Lupus.”

The importance of medication adherence and the effects of depression on teens with lupus; the link between cardiovascular disease and lupus nephritis; results of clinical trials of abatacept: Read about all this and more in the first part of a summary from the annual ACR/ARHP scientific meeting.

And there is lots more in the Spring issue—don’t miss it! To subscribe, visit www.shoplupus.org/subscription.htm.

Been in A Clinical Trial? Share Your Experience!

noreply@blogger.com (Sophie - LFA) — Mon, 12 Mar 2012 16:33:00 +0000

Have you participated in a clinical trial for lupus? If so, what do you wish you would have known before starting the study? Share your experience with others living with lupus who may be considering participating in a clinical trial. April’s host, Kenneth Getz from CISCRP, will add insight and information to the experiences of those who have participated in or are currently participating in lupus research trials. Submit your story now!

Guest Blog: Catching Up with Halee After Everyday Health!

noreply@blogger.com (Sophie - LFA) — Fri, 09 Mar 2012 16:57:00 +0000

15 year old Halee Newby and her family, long-time supporters of the Lupus Foundation of America (LFA) and its Wisconsin Chapter, were featured in an episode of Everyday Health on February 25, 2012. In her guest blog, she reflects on life since the show aired, updates about her health, and more. Thanks again Halee for helping raise awareness of lupus! Did you miss it? Visit Everyday Health Web site for video clips from this episode!

All I can even say is: wow!! My family and I had such an incredible time working with the crew of Everyday Health! It was so much fun working with Ethan and Jenna- they were truly inspirational, supportive and SO much fun to be around! However, I wanted to give you a quick update on some of the things that have happened to us since the airing of the program.

We have received emails and Facebook messages from all over the country from people we don't know who are thanking me for "putting myself out there" to help explain more about lupus, and how someone can look so normal on the outside but be so sick on the inside. We received a truly great email from a woman that said she has been suffering for the past year from what they now believe is lupus (she is still awaiting the final diagnosis). But what we thought was so cool about her email is she said, "thank you so much! My husband sat down and watched the program with me and he had an "ah ha" moment. Halee explained what she goes through so well, and my mom saying what she did, really shed a light on how someone with Lupus can and does feel. My husband finally gets it!" The awareness of lupus increased dramatically from the show- we were hoping it would touch at least one person, but it seems that it touched many more!

(L-R): Taylor Kassel, Ethan Zohn, Halee Newby, and Jenna Morasca

We also met a kid that was on Everyday Health the week prior to our episode; Amanda's Healing Hearts. While I haven't spoke with her yet, I look forward to being able to! We also stay in touch with Taylor and Bonnie. I'm beyond happy to report that Taylor is DONE with her chemo! She is currently on all of the same medication that I am on right now, but nonetheless, the chemo is over with!

While I missed a bunch of school lately with another flare, I feel so blessed with the outcome of the show. I’ve had teachers, friends, parents, and a few random kids come up to me and tell me how proud they are of me and how they look up to me- it’s incredible! I’ve also had many people tell me that I need to have a job/career as a public speaker or mass communication. That’s really an intriguing thought and it had never occurred to me! Probably because all I had to do was talk about something that I had lived with for almost 5 years now… it came so naturally!

I was so proud of my parents too- my mom only cried a few times, my dad actually did cry once, and my little brother had a speaking part! It was really cool to see that everyone enjoyed themselves and had a great time at our event. Our local Lupus Foundation of America Chapter has asked me to help during their walk this year by doing a carnival tent with face painting and butterfly tattoos. I think it will be fun to hang out with the little kids and allow them to have a chance to learn more about fundraising and what they can do to help the cause!

One of the biggest things for us has been the monstrous support from our whole community; people are already asking when our next fundraiser will be! I think we are planning on another volleyball fundraiser/ carnival event for the little kids. We are also going to an open-mike night this year in the hope that local comedians, singers, performers, etc. will come and perform. All of the money raised will once again be donated specifically to finding a cure for lupus. Through this whole process we have learned how much people want to help, how much they love us, and how much we really mean to them.

Taylor, Halee, Ethan, and Jenna with other members of the fundraiser

As always, we must thank the Lupus Foundation of America for getting us on the program, but more importantly for being there for everyone that may suffer from lupus. From the work they do in enlisting politicians involved in getting research funds, to the educational materials they send out daily to people newly diagnosed, the Lupus Foundation of America is truly amazing. And lastly, for the support they give to all of the state associations for their help in raising funds and awareness on a more grass roots basis.

15 Questions with Dr. Brad Rovin - Kidney Issues with Lupus

noreply@blogger.com (Sophie - LFA) — Wed, 07 Mar 2012 17:20:00 +0000

Lupus nephritis, or inflammation in kidneys caused by lupus, can make kidneys unable to properly remove waste from your blood or control the amount of fluids in your body. This month, Dr. Brad H. Rovin answered your questions about kidney issues and lupus.

Read his answers now!

Actor, Comedian, and Musician Nick Cannon Diagnosed with Lupus Nephritis

noreply@blogger.com (Sophie - LFA) — Mon, 05 Mar 2012 17:49:00 +0000

During an appearance on ABC-TV’s Good Morning America, actor, comedian, and musician Nick Cannon announced that he has lupus-related kidney disease, called lupus nephritis.

Lupus is a disease that can affect any organ system and kidney involvement is one of the most serious manifestations of the disease. By publicly discussing a very personal health issue, Nick Cannon is helping to increase awareness of lupus and its health effects on the kidneys.

Read more >>

Lupus Research Report: Dynamics of Lupus within First Five Years of Diagnosis

noreply@blogger.com (Sophie - LFA) — Tue, 21 Feb 2012 17:34:00 +0000

The severity of lupus is influenced by both disease activity and the possibility of organ damage over time. Organ damage in people with lupus is thought to arise slowly over time due to an interaction of disease processes, possible co-existing conditions, and drug treatments. Levels of autoantibodies circulating in the blood are a primary indicator of lupus disease activity and can change over time, but these dynamics around the time of lupus diagnosis have not been well studied. The results of this study reveal differences in autoantibody profiles over time in people with lupus, with important ethnicity-related differences, and their relationship to lupus-mediated organ damage over time. The potential relationship between organ damage and steroid use in people with lupus is discussed.

Read more>>

Love Actually - Appreciating Your Mate

noreply@blogger.com (Sophie - LFA) — Tue, 14 Feb 2012 17:47:00 +0000

When one partner in a relationship has a chronic disease, both can be affected. However, open and honest communication can be the most powerful tool. Read Love Actually – Appreciating Your Mate now and tell us: What is your advice to someone who loves someone with lupus?

The Editor of Lupus Now® magazine needs your help with the Summer 2012 issue!

noreply@blogger.com (Sophie - LFA) — Thu, 09 Feb 2012 16:10:00 +0000

Unusual jobs: For our cover story we are looking for men with lupus who will talk about how they balance their out-of-the-ordinary job with the challenges of lupus. If that description fits you, write to us at lupusnow@lupus.org, with "unusual" in the subject line. Please include a little bit about your life with lupus, along with your name, location, and telephone number.

Play: Do you still get silly and play the way you did as a child? We’re going to write about the importance of playfulness, and how acting like a kid again can benefit your health. If you know how to unwind and how not to act your age, write to us at lupusnow@lupus.org, with "play" in the subject line. Please include a little bit about your life with lupus, along with your name, location, and telephone number.

Spirituality: Has a sense of spirituality helped you on your lupus journey? If you have some suggestions for other readers, write to us at lupusnow@lupus.org, with "spirit" in the subject line. Please include a little bit about your life with lupus, along with your name, location, and telephone number.

Skin: Symptoms of cutaneous lupus can range from rashes to lesions, causing scarring, changes in pigment, and more. If you have experienced skin involvement due to lupus and you can talk about treatments that have helped—whether from medication or a procedure—write to us at lupusnow@lupus.org, with "skin" in the subject line. Please include a little bit about your life with lupus, along with your name, location, and telephone number.

My View: Maybe nothing comes more naturally than daydreaming about summertime during the chill of winter. Send a description of your ideal summer vacation, in 30 words or less, to lupusnow@lupus.org, with "vacation" in the subject line. We’ll print as many as we can in the Summer issue, and post the rest online at lupusnow.org.

Congressional Lupus Caucus Launched in U.S. House of Representatives to Advance Awareness of Lupus

noreply@blogger.com (Sophie - LFA) — Tue, 07 Feb 2012 19:07:00 +0000

Today, Representatives Tom Rooney (R-FL), William Keating (D-MA), Ileana Ros-Lehtinen (R-FL), and Jim Moran (D-VA) announced the formation of a Congressional Lupus Caucus. The Caucus will work in collaboration with the Lupus Foundation of America, the leading voluntary health organization for people with lupus, to ensure that all Members of Congress are armed with the understanding of the impact of lupus on individuals and their families, and actively support the advancement of lupus research and increased awareness of lupus among the public and health professionals.

Ask your Representative to join the Caucus today! Click here to take action!

Learn more about the Caucus on LFA's Web site.

First Ever Study of Cholesterol-Lowering Drugs in Children With Lupus

noreply@blogger.com (Sophie - LFA) — Wed, 01 Feb 2012 19:45:00 +0000

Adults with lupus are at increased risk for developing cardiovascular disease as compared to the general population. Increased levels of blood cholesterol can result in atherosclerosis, or hardening of the arteries, which is itself a risk factor for cardiovascular disease. Previous studies indicate that subclinical atherosclerosis may be present in children with lupus. Since atherosclerosis is now known to begin in childhood, even in healthy people, the risk of developing atherosclerosis and cardiovascular disease has become a growing concern for the health of children with lupus. This study examined the safety and efficacy of atorvastatin (Lipitor®), a cholesterol-lowering drug, in children with lupus over a three-year period. The results suggest that lipid-lowering drugs like atorvastatin can safely and effectively reduce cholesterol levels in children with lupus. However, the effects of this treatment regimen do not warrant administration of lipid-lowering drugs to all children with lupus and future studies may indicate specific subpopulations that could benefit most.
Read more>>

The Editor of Lupus Now® magazine needs your help with the Summer 2012 issue!

noreply@blogger.com (Sophie - LFA) — Tue, 31 Jan 2012 19:39:00 +0000

Jenny's Notebook: Directions and Destinations

noreply@blogger.com (Sophie - LFA) — Fri, 27 Jan 2012 19:40:00 +0000

Jenny's Notebook is back and better than ever for 2012! Check our her latest post about taking control and managing her lupus to live the best life possible, despite its challenges.

How truthful are you about the way you manage your lupus? I’m going to ask you a few questions; let’s see how you do—and be honest.

Have you ever skipped taking your meds? Once or twice? For a week? For longer?

Have you ever spent the whole day in the sun without any sunblock or sun-protective clothing?

Have you ever insisted on working late every night for weeks on end because no one else could possibly finish that project but you?

Truth is…
Did you answer “Yes’, to any of these? If so, you’re not alone. I confess that I’m guilty of each and every one.

And if your doctor asked you those same questions, how would you answer?

You might first deny everything—that will work until the lab test results come in. You might admit to one or two, like no sunblock, or a few extra hours on the job—you’d probably get away with that for awhile.

But you should know that anyone with lupus answering ‘yes’ to questions like these has just become the doctor’s worst nightmare: the noncompliant patient.

Every doctor dreads this patient because those noncompliant actions have consequences. Maybe it was a mild flare that knocked us off our feet for a few days and disrupted our plans. But maybe it was a severe flare—one that put us in the hospital for a few weeks and scared our loved ones half to death.

An article in the Fall 2008 issue of Lupus Now discussed why people are non-compliant with their prescribed medicines: adverse side effects, medication costs, inadequate insurance coverage. Research shows that clinical depression can also cause noncompliance. Forgetfulness, too, plays a role, maybe due to lupus “fog,” maybe because of internal disobedience—in other words: denial.

We’re only human
It’s human nature, I think, to want to go back to how we used to be—our former self, “LBL: Life Before Lupus.”

In our beautiful Life Before Lupus, we could do anything we wanted. We had plans for recreation, for work, for family. We had dreams and goals. Being sick had no place in this life. And having a disease that would require our attention forever? The possibility simply never occurred to most of us.

Then lupus happened. And that beautiful life became “LWL: Life With Lupus.”

If we’re not careful, that dream—the yearning for Life Before Lupus, can turn into a nightmare. By disrupting our doctors’ efforts to keep our lupus under control, we become our own enemy. We countermand our own best chance of getting better.

It’s taken some 18 years, but I’ve come to see that following all my doctors’ directions is like following a road map. I no longer view my Life With Lupus as a dark and dangerous journey. Instead I understand that my true destination is to live the best life possible, despite the many challenges of lupus.

And when I get lost, or have a flat tire, or the car hood falls on my head (good thing I have a thick skull!), that’s when I call on my personal road crew for support: family, friends, co-workers, boyfriend, and yes—my doctors.

So today I pledge to take my pills, remember the sunblock, forgive the doctor for making me wait, and smile at the lab tech drawing my blood. Because no matter how many wrong turns I have taken, I want my trip to last a long time!

Won’t you join me?

I remain,
Your faithful correspondent and traveler,
Jenny

Lupus Foundation of America Expands Education Series for 2012

noreply@blogger.com (Sophie - LFA) — Thu, 19 Jan 2012 18:00:00 +0000

The Lupus Foundation of America (LFA) has announced its 2012 topics and dates for its nationwide education series, Lupus: Learn from the Experts,™ designed to provide people with lupus essential information about living with lupus from some of the world’s leading experts. The program is a series of webinars hosted by a variety of experts that will cover a wide-array of issues important to people with lupus including, pediatric lupus, diet and nutrition, pregnancy and lupus, skin lupus, treatments for lupus, among others. This year the number of webinars has been expanded and includes two that will be offered in Spanish.

To learn more, please visit www.lupus.org/learn

Lupus Research Report: Reduced Growth and Delayed Puberty in Children with Lupus

noreply@blogger.com (Sophie - LFA) — Thu, 12 Jan 2012 19:28:00 +0000

From our latest Lupus Research e-newsletter

Children with lupus often face unique challenges because their disease can be more severe and may require more aggressive treatments. Lupus or its treatments may have lasting biological effects. However, little is known about growth and development in children with lupus. The researchers examined possible impairments in growth, such as height, among children with lupus of varying ages and also depending on how long they have had lupus. Possible effects of steroid treatments on height were also specifically examined.

Read more>>

Changes to Lighting in your Home

noreply@blogger.com (Sophie - LFA) — Thu, 05 Jan 2012 20:07:00 +0000

A change is coming to the light bulbs you will find for sale in the United States. Current incandescent light bulbs do not meet the energy efficiency standards and as a result, the phase out of general service incandescent light bulbs began January 1, 2012. The larger lighting manufacturers have developed three core types of light bulbs: Compact Fluorescent Light, Halogen, and Light-emitting Diode (LED). However, anecdotally, many people with lupus have reported more adverse reactions or flares when exposed to fluorescent lighting.

Learn more about how this lighting change may affect you and others with lupus.

Because the halogen and LED bulbs are newer technologies, we have yet to determine how they will affect people with lupus. We would like to hear from you to find out how halogen and LED bulbs may affect people with lupus. If you try these new bulbs in your home, please email advocacy@lupus.org to share whether or not they have any effect on you.

Make Your Year-End Gift to the LFA Today

noreply@blogger.com (Sophie - LFA) — Thu, 15 Dec 2011 16:57:00 +0000

As we come to the end of 2011, we reflect back on all the progress we’ve made this year. Your support enabled the Lupus Foundation of America (LFA) to increase awareness about lupus, generate greater investments in lupus research, and stimulate the development of new, safe, and more effective treatments. Together, we have made great progress. But there is still much more work that needs to be done.

This year, three long-time LFA supporters generously pledged to the LFA a total of $100,000 — enough to fund a lupus research project for a year, like Dr. Vikki Abraham’s study on lupus and pregnancy.

"Our studies are moving towards the goal of working out better ways of predicting pregnancy complications, and better ways of treating them. Without the initial funding from the LFA, we never would have been able to accomplish this."

Vikki M. Abrahams, Ph.D.

Yale University School of Medicine

I am reaching out today to ask you and all LFA supporters to band together and match their generosity through our 2011 Year-End Giving Campaign.

Please consider making your generous 2011 Year-End Contribution to the LFA by December 31, 2011 to help reach our goal and support even more life-saving research initiatives in 2012.

Thank you for your support, and we look forward to another year of progress in 2012.

Sincerely,

Sandra C. Raymond
President and CEO
Lupus Foundation of America, Inc.

15 Questions with Jana Eshaghian – Dealing with the Stress of Being a Parent with Lupus

noreply@blogger.com (Sophie - LFA) — Thu, 01 Dec 2011 17:45:00 +0000

A parent with lupus adds challenges to the already heavy demands of being a parent. Small adjustments to your lifestyle can help minimize disruptions in your children’s daily schedule and activities. You will be able to devote more quality time to your children when you receive more rest and reduce stress. This month, Jana Eshaghian will respond to questions regarding ways to address the stress of being a parent with lupus.

Submit your questions to Ms. Eshaghian by December 7. If you have a question about lupus that is not associated with this month’s topic, we invite you to submit your inquiry to our LFA Health Educators and your question will be answered as soon as possible.

Learn more about 15 questions

Review transcripts from our previous 15 Questions and Web Chats

Long-Term Impairments of Functioning in Obese Women with Lupus

noreply@blogger.com (Sophie - LFA) — Mon, 28 Nov 2011 16:26:00 +0000

From our research e-newsletter
Relatively few studies have been conducted about the role and effects of obesity in the lives of people with lupus. Obesity is associated with disability, both in the general population and among people with lupus. Since up to half of people with lupus may be obese, it is important to determine to what extent specific functions (such as walking or climbing stairs) are impaired in people with lupus. Identification of preventable risk factors for disability, such as obesity, has the potential to decrease the negative effects of obesity on functioning in people with lupus.
Read more>>

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Guest Blog: ‘Tis the season to dine at someone else’s table

noreply@blogger.com (Sophie - LFA) — Tue, 15 Nov 2011 18:52:00 +0000

Today's guest blog comes from Jessica Goldman, aka Sodium Girl. We were thrilled to feature her in the Fall 2011 issue of Lupus Now Magazine and even more excited to hear from Jessica herself for a guest blog. Last holiday season, she shared with us some delicious Thanksgiving recipes and this year, she will guide our readers on getting through the challenges of being a guest with a dietary restriction during the holidays. Enjoy and check out her blog at www.sodiumgirl.com.

Over the next few weeks, family and friends will welcome us into their homes, opening up their refrigerators, ovens, and china cabinets for our entertainment and pleasure. We will be treated to succulent feasts, potlucks, and too many pies to count. And besides the food itself, sharing these treats with those we love is what the holidays are all about.

But as someone with food restrictions, keeping to one’s diet while remaining a gracious guest can feel trickier than trussing a turkey - if you don’t have the right moves!

Without ever having to impose on the host or hostess, it is easy to participate in all the culinary holiday fun while keeping your low-sodium diet. But before we even get to the low-sodium solutions, remember this: people want their guests to be happy and full. So if Aunt Janie or friend Sal found you nibbling on the edible table arrangements to stave off starvation, they would be horrified that they had not provided anything for you to eat. Sharing is caring. So here are some ways to let your host or hostess provide for you, without asking too much of their time, money, or catering bill.

Option 1: Full-Disclosure
Chances are your relatives and besties will already know about your food needs and they’ll most likely want to try their hand at making a few salt-free treats for you. So when you RSVP for the event, ask if you can send a recipe or two for easy, salt-free appetizers--like a bean dip--or if they want to make you a full meal, pass along a list of your needs so that they know exactly what ingredients to use and, of course, those to avoid.

Option 2: Helping Hand
Avoid asking the busy host or hostess to make a special meal for you and offer to bring a few low-sodium treats with you. Easily transportable appetizers --like jicama fries, salt-free bruschettas, or bite-sized beef tenderloin bites--will not only fill you up but will taste equally delicious to others.

Option 3: Edible Gifts
If you don’t know the host or hostess that well, one way to ensure yourself some salt-free food without ever really having to bring up the topic is to bring a salt-free food present. A can of salt-free popcorn, salt-free pickles, or salt-free pasta pretzel sticks will look too good (and perishable) to put in the cupboard. And with these edible gifts as part of the spread, you will be guaranteed something low-sodium to nibble on.

Option 4: Secret Stash
Last but not least, you can always pack a snack pack. Bring a small bag full of individual portions of traditional holiday foods, and that way, if the host or hostess suddenly realizes you have nothing to eat (gasp!), they’ll be happy to know you came prepared. Throw your food on a plate and be served with everyone else.

No matter which tactic you choose to take, remember that these are your family and friends (and maybe coworkers, too). They love you. They love seeing you eat. And the more you share with them about your diet--with enthusiasm, of course--the more they will learn about what you need. And who knows...next year there may be a whole low-sodium cornucopia waiting for you.

For more tips on making sure the Turkey and other traditional holiday dishes stay tasty and salt-free, check out Jessica’s holiday tips from last year!

Lupus Research Report: Genetic Profiling Can Predict Some Lupus Manifestations

noreply@blogger.com (Sophie - LFA) — Fri, 11 Nov 2011 17:52:00 +0000

From our research e-newsletter
People with lupus can experience a wide variety of disease-related manifestations, including nephritis (kidney inflammation) and skin rashes. The variability of these symptoms likely results from underlying genetic factors. While most studies have focused on identifying the presence of specific genes that increase the risk of developing lupus, few studies have focused on which genes may give rise to which manifestations of lupus. Identification of which genes may be associated with which lupus manifestations could help facilitate the future development of personalized medicine for people with lupus.
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Updates from ACR 2011 - Prevalence of lupus, clinical trials, and more

noreply@blogger.com (Sophie - LFA) — Tue, 08 Nov 2011 20:31:00 +0000

It's day 4 of the American College of Rheumatology's Annual Scientific Meeting in Chicago! There is no stopping Dario and Jenny as they bring us the latest in lupus research and updates. There have been many exciting announcements including results from a LFA initiative studying the effect of background medication in clinical trials for lupus treatments, which may provide needed insight on patient response and help create pathways forward for the development of new treatments.

In addition, Dr. S. Sam Lim from Emory University School of Medicine will present in a new study this afternoon regarding the number of people with lupus in the United States. The data indicates that overall prevalence of lupus in this population is higher than seen in previous studies, suggesting longer survival and/or more frequent diagnosis of lupus. According to Dr. Lim, lupus continues to affect significant numbers of people across racial and ethnic lines, but with a disproportionate burden on black women. Results from this study provide additional and more accurate evidence that lupus is a significant and complex disease. You can read more about it here and follow along with us on Twitter as we live-tweet the session.

Hope you all are enjoying the updates. Let us know if you have any questions and I will be sure to pass them on to our team in Chicago!