February 29, 2008

Can I Support a Walk for Lupus Now Walk If There's No Walk in My Area?

It's Friday everyone! Woohoo!

Hopefully, you've all had a great week. It's been really busy here. The Spring 2008 issue of Lupus Now magazine is about to come out. So next week you can expect to see an entry about that.

I'm still buzzing over last night's LOST. To quote my friend Carlea ... holy moly. The concept of time travel / alternate realities / worm holes ... and the like ... seems to be moving into focus. It was another great episode. LOST is on a roll this year.

And now to lupus news.

Occasionally, I'll get questions from other lupus bloggers ... or from people who happen across this blog ... about a variety of things. In the last week or so, I've received similiar questions from folks (including my pal Chronic Chick) about supporting the Walk for Lupus Now event. So I wanted to address that question.

I'm paraphrasing, but basically the question is this. How can someone provide online support for a Walk for Lupus Now event, if:
  1. there is no LFA Chapter in his/her area, or
  2. a person's mobility may prevent him / her from participating in a walking event for the LFA?
That's a great question. If you would like to somehow help out with a Walk for Lupus Now event, but are unable to do so for whatever the reason, there is a way to lend your support.

We have created this graphic which you can post to your blog or to your website. And you can attach this link (http://www.firstgiving.com/lfa) to this graphic. Actually, what you might want to do first is go to the FirstGiving link and create your own fund-raising page on behalf of the Lupus Foundation of America, and then use that link and attach it to the Walk graphic.

If you are interested in providing online support for a Walk for Lupus Now event, and you would like me to send you the Walk graphic, send me an email to webmaster@lupus.org. I'd be more than happy to do so.

That's all the scoopage from this end. Have a wonderful weekend, wherever you are.

Until next time, Wick



February 27, 2008

Mark Your Calendars for Upcoming Lupus Foundation of America Events!

Happy Wednesday to you.

Is it me, or is the week going by pretty quickly? I cannot believe it's already Wednesday.

There are so many things to share with you this morning. Lots of great Webchat topics / speakers have been locked into place. Our annual Advocacy Day is less than 2 weeks away. The LFA Walk season kicks off in April. Our annual awards gala is in May. World Lupus Day and Lupus Awareness Month are also in May.

So grab a pen and a calendar, and let's get started.

2008 Lupus Advocacy Day on Capitol Hill -- March 10-11, 2008

We're now less than 2 weeks out from this event. And there are some spaces still available. Learn more about the LFA's annual advocacy day here.

Save the Date -- Walk for Lupus Now Season starts April 2008

Walk for Lupus Now season kicks off in April 2008, with walks taking place across the country. Funds raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services. Find a walk that's close to you.

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

Save the Date -- Wednesday, May 7, 2008

The LFA's 5th Annual Awards Gala will be held at the Mandarin Oriental Hotel in Washington DC on Wednesday, May 7. To learn more, visit http://www.lupus.org/gala. The page was just updated with lots of great info. The three honorees have been named. Soledad O'Brien, CNN anchor and special correspondent, has been named Master of Ceremonies. And ... Patti LaBelle will be the evening's entertainment.

Save the Date -- Saturday, May 10, 2008

World Lupus Day will again be held on May 10, 2008. To learn more, visit http://www.worldlupusday.org/. Countries have just started to share with us the activities they'll be doing to raise public awareness about lupus this year. Check back for more info in the coming weeks and months.

Save the Date -- Upcoming Webchats at the LFA

Lots of great webchats are coming. All chats take place at 3 p.m. Eastern.

  • Wednesday, March 12 -- Kidneys & Lupus with Dr. James Tumlin
  • Wednesday, April 9 -- An Open Forum with Dr. Bevra Hahn
  • Wednesday, May 14 -- Medication Management & Lupus with Dr. Joan Merrill
  • Wednesday, May 28 -- Being Newly Diagnosed with Lupus with Dr. Don Thomas
Check out the new LFA Message Boards

Almost 3 weeks old, the LFA message boards are doing well. Take a moment, stop by and join the discussion. We hope to see you there.

Whew! As you can see, lots going on. We hope you can join us for as many of these events as you can.

Until next time, Wick



February 25, 2008

MAPRx: A Strong National Voice on Medicare Part D

Good Monday morning to you. A lengthy entry to share with you this morning so I'm going to jump right into it. Wishing you all a great day, and a good week ahead.

Until next time, Wick

MAPRx: A Strong National Voice on Medicare Part D

Since 2004, a coalition known as Medicare Access for Patients-Rx -- more commonly known as MAPRx -- has become the unified voice of 32 patient, family caregiver and health professional organizations. Some of the organizations in this coalition include the National Kidney Foundation, the Epilepsy Foundation, the Lupus Foundation of America and the National Multiple Sclerosis Society.

MAPRx offers respected and sought-after expertise and input to policymakers and administrators on issues related specifically to the Medicare prescription drug benefit and people with chronic diseases and disabilities. MAPRx’s targeted online and printed resources offer straightforward information about the Part D benefit and the Low-Income Subsidy (LIS) with a special focus on the needs of those with chronic diseases and disabilities.

Below are some of their accomplishments.

Regulatory and Advocacy Accomplishments

Congress
MAPRx held regular meetings with key House and Senate committee leadership to inform them of MAPRx actions with CMS (Center for Medicare and Medicaid Services), MedPAC (Medicare Payment Advisory Commission), SSA (Social Security Administration) and USP (United States Pharmacopeia). Senate Finance Committee regularly seeks MAPRx input on policy issues.

MedPAC
MAPRx met with executive and senior staff to advocate MMA (Medicare Modernization Act) modifications to respond to needs of MAPRx constituents. MedPAC regularly seeks MAPRx’s input on policy issues.

Social Security Administration
MAPRx advocated changes to LIS policies and procedures to better serve MAPRx constituencies.

Grassroots Survey
MAPRx conducted national grassroots survey of the Part D experiences of beneficiaries with chronic diseases and disabilities.

Communications Accomplishments

http://www.maprx.info/
Launched and maintain an easy-to-use web portal to a wide variety of Part D resources, including materials developed by MAPRx. The site has received 300,000+ visits since its launch. It is one of only three sites that SSA links to on its Part D website, and has been listed in a number of major newspapers as a valuable resource for beneficiaries.

LIS Outreach Materials
In partnership the Access to Benefits Coalition and National Health Council, MAPRx developed and updated outreach kits to encourage LIS applications. There was broad dissemination to coalition members, health insurance counselors, and the media, and it was posted on website. MAPRx also developed two timelines explaining the multiple mailings received by beneficiaries with LIS during the fall enrollment season, as well as developed educational materials explaining future LIS eligibility for those already receiving the subsidy.

Enrollment Information Materials
MAPRx developed a grassroots Part D orientation kit when the program launched. Additionally, the coalition produced the Open Enrollment Top 12 Questions & Answers in 2006 as well as an updated version of the Q&A in 2007 along with a new version for dual eligible individuals. These materials were mailed to all SHIPS, Congressional district and state offices and the media with broad email distribution to other key stakeholders (see below). 350,000+ copies were distributed by Pfizer to independent pharmacies in 2007.

Distribution
MAPRx developed partnerships with CMS and the federal Agency on Aging to disseminate outreach and information materials described above to their community-based partners and agencies working directly with beneficiaries. The coalition also distributed relevant materials to Congressional caseworkers via both mail and email.



February 22, 2008

It’s Official! Lupus Has “Gone to the Dogs.”

Good morning all.

Weatherwise, it's a blah morning here in the metro DC area. Freezing rain and ice are pretty much everywhere. Fortunately ... getting into work this morning was not bad at all. Weather's supposed to be like this throughout the day.

This morning, I'm going to jump right into things. I wanted to do a follow up on an entry from October 2007.

You may recall the blog -- A Woman, A Wheaten and a (very long) Walk. The blog is written from the viewpoint of a one year old Wheaten terrier named Landis.

To refresh your memory, Cindy Coney – an LFA Board member who has lupus – and Landis decided to take on lupus by walking 916 miles around their neighborhood to raise money for lupus research, with the intent of completing this impressive feat by March 10, 2008.

Why 916 miles, and why by March 10, 2008? Because it’s 916 miles from their home in Tampa, Florida to the steps of Capitol Hill in Washington, DC. And on March 10, 2008, the Lupus Foundation of America (LFA) will host its annual Advocacy Day, by having hundreds of lupus patients and their families visit their senators and representatives in DC to inform them about lupus, and to ask for their support.

So were they successful? Well, let me have Landis respond. “You just are not going to believe this. Mom Cindy and I have met and exceeded our goals. Would you believe that we have raised $10,540 for lupus and walked more than 950 miles?” You can read about their adventures here.

Congratulations to Cindy and Landis!

As I get ready to sign off here, I don’t think Landis will mind if I borrow his signature phrase.

Until next time ... “big doggie kisses to everyone,”
Wick

Photo: Cindy Coney and Landis



February 20, 2008

Lupus Blog Spotlight: Cameron's Blog

Good morning:

Hope this finds everyone doing well. Things are busy here in DC. We’re ramping up for our annual LFA advocacy days on Capitol Hill. This event takes place in less than 3 weeks – March 10-11, 2008. If you’re interested in joining us, there is space still available. You can learn more here.

Less than 2 weeks old, the recently launched message boards are doing well so far. As of this morning, we have more than 250 registered users for them. If you’re interested in joining the boards, visit here.

And finally, I’d like to do another lupus blog spotlight. This one is called Cameron’s Blog. Cameron Bonner is located in California. And his older brother Austin has done a pretty amazing thing; he donated a kidney to Cameron.

Cameron was diagnosed with an acute type of lupus about 13 years ago. His first kidney transplant occurred in July 2000. Prior to that transplant, three Bonner siblings -- there are 15 Bonner children in total -- were tested to see if any of them matched as a possible kidney donor for Cameron. Only Austin Bonner and another older brother, Marty, tested as 100 percent matches.

At the time, Austin was stationed in Hawaii. Marty, who lived in Washington, was closer so the decision was made that he would donate his kidney. Unfortunately, lupus flare-ups in 2005 attacked Cameron’s donated kidney and he experienced a second kidney failure.

Austin knew he was going to be the donor this time. The surgeries were set for October 2006, but the month before, Cameron developed a bacterial infection that caused a stroke. Doctors put the operations on hold until Cameron received a clean bill of health.

They got the "green light" late in 2007, and on January 15, 2008, Austin and Cameron Bonner had the kidney transplant surgery.

You can read about their amazing journey on Cameron’s Blog.

Until next time, Wick



February 15, 2008

Mrs. Texas 2008 Helps Raise Public Awareness About Lupus

Hi everyone.

Wherever you are … I hope you had a nice Valentine’s Day. Thought I’d jump right into lupus news this morning.

Allow me to introduce to you … Mrs. Jeannie Deakyne, Mrs. Texas 2008.

Jeannie Deakyne has worked with the Lupus Foundation of America for several years. As Mrs. Texas International 2005, Jeannie worked with the LFA as an advocate for the national platform of "Living with Lupus." Now as Mrs. Texas 2008, Jeannie will again use her position for her platform, which is to raise public awareness about lupus.

Why is she so passionate about lupus? Her mother, Debbie Panton, was diagnosed with lupus 13 years ago. Both Jeannie and her mother were featured on the Spring 2006 cover of Lupus Now magazine.

If you have the opportunity, stop by Jeannie’s website http://www.mrstexas2008.com/ and offer your support. Or just say hi.

I think that’s all the scoop from this end. Thanks to everyone who’s registered with our new message boards. As of this morning, we have more than 200 registered users. And thanks to all the lupus bloggers who continue to reach out to me. As you can see, our list of “Lupus Blogs We Read” is growing. I’ll be doing more lupus blog spotlights in the coming weeks.

For those of you here in the states, enjoy your 3 day weekend.

Until next time, Wick

Photo: Jeannie Deakyne, Mrs. Texas 2008




February 13, 2008

Spring '08 Walk for Lupus Now Season Has Arrived!

Morning everyone ... I am still recovering from my commute home last night. It took me just shy of 6 hours. All because of weather ... and the fact that it's DC. All I'm going to say for now is ... Egads.

Since I got no sleep last night ... I'm going to go get hopped up on caffeine. But before I go, I wanted to share with you some lupus news.

Until next time, Wick

Walk for Lupus Now

Walk for Lupus Now season is getting underway, with walks taking place across the country. Funds raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services.

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 near you, you can still help the LFA by setting up your own fund-raising page and participating in your own walk. For example, you could walk your local mall, hiking path or community park.

Since spring is almost here, and the weather will be warming up, why not take a walk, and help the Lupus Foundation of America find a cure for lupus.

Reminder

Today's Webchat with Dr. Amy H. Kao starts at 3 p.m. Eastern. The topic is Women's Heart Health. We hope you can join us.



February 12, 2008

Seeking Interviewees for Lupus Now magazine

Good morning.

Here in the metro DC area, it's the Chesapeake Primary ... so get out and vote. Make your voice heard!

Couple of lupus-related items to share with you.

In the next issue of Lupus Now magazine, we’re planning articles on the following topics. If you have lupus and want to share your story on any of these subjects, please write to lupusnow@lupus.org and include your name, phone number, and city and state of residence. We look forward to hearing from you!
  1. The physical and emotional effects of weight gain from medications or due to inability to be active
  2. Applying for health or life insurance when you have a pre-existing condition such as lupus
  3. The questions you wish you had known to ask when you were first diagnosed with lupus

2008 Lupus Advocacy Day on Capitol Hill -- March 10-11, 2008

To learn more, visit http://www.lupus.org/webmodules/webarticlesnet/templates/new_actionadvocates.aspx?articleid=212&zoneid=55.

Save the Date

The LFA's 5th Annual Awards Gala will be held at the Mandarin Oriental Hotel in Washington DC on Wednesday, May 7. To learn more, visit http://www.lupus.org/gala. Check back for more information as it becomes available.

Save the Date

World Lupus Day will again be held on May 10, 2008. To learn more, visit http://www.worldlupusday.org/. Check back for more info in the coming weeks.

That's the scoop from DC. Have a great Tuesday.

Until next time, Wick







February 11, 2008

Women's Heart Health: The Wed., February 13 Webchat at the Lupus Foundation of America

Morning everyone.

Hope you had a great weekend. Mine was good, but man, was it windy here in the metro DC area. And this morning, it is only 17 degrees. The high today is going to be 32.

So I'm a week into going to the gym and my body is a bit sore. I'm not sure if it's because I'm doing things incorrectly, or because I'm not used to this much exercise. But I have to say, I do like going, and I am enjoying the variety of things I'm trying.

And now to lupus news.

Wanted to give you a quick reminder about the Lupus Foundation of America's Webchat for February 2008.

This coming Wednesday afternoon, February 13, at 3 p.m. Eastern Time, Dr. Amy H. Kao, an assistant professor of medicine at the University of Pittsburgh and rheumatologist with the Lupus Center of Excellence at the University of Pittsburgh Schools of the Health Sciences and University of Pittsburgh Medical Center (UPMC), will host a Webchat on Women's Heart Health.

Dr. Kao graduated from the State University of New York Science Center at Brooklyn and completed her residency and fellowship at UPMC. Dr. Kao’s research interests include cardiovascular disease in lupus and rheumatoid arthritis, and as well as how cognitive impairment can impact the course and outcomes of patients with lupus. She currently is studying novel biomarkers that may help physicians predict disease activity in lupus patients.

Dr. Kao’s work has been funded by the American College of Rheumatology, the Arthritis Foundation of Western Pennsylvania, National Institutes of Health, and the Pittsburgh Foundation.

As always, you can submit a question in advance.

We hope you can join us for the Webchat on Wednesday, February 13. After the chat has ended, you can continue the discussion in our new message boards. There's a category called LFA Webchats. We hope to see you in the message boards.

Until next time, Wick





February 08, 2008

Lupus Foundation of America Launches Message Boards on Its Website

Happy Friday afternoon to you. I have great news to share!

The Lupus Foundation of America (LFA) has added message boards to the Community section of its Website -- lupus.org -- as a service to people with lupus and their families. 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. You can access the message boards here.

People with lupus often suffer from severe and disabling joint pain, overwhelming fatigue, and organ damage, which can be disabling and isolating. The LFA message boards will be a valuable resource for individuals who are not able to attend a support group meeting or education program, particularly those who live in rural areas or where no local resource is available. In addition, message board users can anonymously seek help without fear of revealing sensitive medical information to friends or employers.

Initial discussion topics include Recently Diagnosed with Lupus, Lupus Treatments, Men with Lupus, Teens with Lupus, and Coping with Lupus. There also is a category for discussing topics featured on LFA Webchats. Additional topics will be added based on feedback from message board participants.

Individuals visiting the LFA message boards can view what others have posted, post their own questions, or share comments about topics of interest. The message boards will serve to create an online community where people living with lupus, their relatives and friends, care givers, and information seekers can meet, bond together, share ideas, and build hope.

So ... come join us in the message boards today!

Have a wonderful weekend. Until next time, Wick




February 07, 2008

Show Your Love for Someone with Lupus. Give a Gift of Hope this Valentine's Day!

Show your love for someone with lupus! Give the Gift of Hope by making a personal, honorary or memorial contribution to the Lupus Foundation of America. Any gift that you make today helps lead to a better tomorrow in the fight against lupus.

Through your generous contribution, the LFA will be able to provide hope and support to almost 2 million people -- women, men and children and their families -- who live with this life-diminishing, life-threatening disease.

From all of us at the LFA, we extend best wishes to you and your loved ones this Valentine's Day!





February 06, 2008

The Dating Game: Having Lupus Doesn't Mean Saying No to Love

Hi everyone.

Even though Punxsutawney Phil saw his shadow, which means 6 more weeks of winter, it sure doesn't feel like it. It's going to be an unusually warm day here in DC. Plus, it's the day after Super Tuesday -- and it's DC -- so there's lots to talk about in our nation's capital.

And speaking of things to talk about, I have an article I wanted to share with you. It's very timely, especially since Valentine's Day is 8 days away.

The article -- The Dating Game -- was written by Mary Dixon Lebeau, and appeared in the Summer 2007 issue of Lupus Now magazine. I will post the first half of the article here, and then link to the article in its entirety.

Wishing you a great Wednesday.

Until next time, Wick

The Dating Game

For Erica DeMeerleer, Valentine’s Day 2002 was anything but romantic. In fact, the events of that week nearly broke her heart.

DeMeerleer, an account executive for Comcast, was 25 and involved in a two-year relationship at the time. She had moved from her hometown of Bellingham, WA, to Seattle for her work, but was trying to maintain the relationship long distance.

“It was a period of high stress for me,” DeMeerleer recalls. “I was adjusting to the new home, struggling with high rent payments, and trying to keep my relationship going.” She was also coping with incredible pain, which she thought was a symptom of the rheumatoid arthritis she had been diagnosed with six years earlier.

Then came the week that shook DeMeerleer’s world. “Three days before Valentine’s Day, my boyfriend broke up with me. Then a few days afterward, my doctors told me I had lupus,” she says.

“I was sure nobody would want to deal with my problems and that I would probably always remain single,” she says. “I remember thinking no one would ever love me.”

Learning that you have lupus is always hard, but when you’re single, you face an additional set of fears. You may struggle with when and how to discuss lupus with a potential partner -- and worry about how he’ll react once you do. You may even wonder if you could keep up a healthy romance at all, especially when you’re feeling fatigued or self-conscious. Is it possible to look for love -- and actually find it -- while dealing with all this?

Fortunately, the answer is a resounding yes. The key is the same as in any relationship: communication. "The number one issue in any relationship is communication," says Robert Phillips, Ph.D., founder of The Center for Coping in Hicksville, N.Y. and author of Successful Living With Lupus and Coping With Lupus. "With lupus patients, it depends on how well the person diagnosed is able to communicate what they’re experiencing or what they need without applying pressure to the other person."

It may take work, but with good communication, lupus patients can have a “happily ever after” -- as DeMeerleer can attest. Just one year after that heartbreaking Valentine’s week, DeMeerleer met Zeb and fell in love; the couple celebrated their second wedding anniversary last October.

“It works because he’s very open and honest, which compels me to tell it like it is,” DeMeerleer says. Honesty is key to the strength of their relationship. “We’re working hard on something great,” she says.

Sharing and caring

Usually the road from “glad to meet you” to “happily ever after” is a long one, and in the best cases, a variety of conversations will be held along the way. For singles with lupus, one of those conversations will reveal the diagnosis. This discussion, however, does not have to happen right away.

“There is no rule of thumb for when,” says Phillips. “It really shouldn’t be a part of your introduction. For example, you wouldn’t say, ‘Hi, glad to meet you, I have lupus.’ I suggest you wait to get to know the person and see if there’s chemistry.”

“When you reach a point in the relationship when you’re naturally sharing things about your life, lupus would be one of the things you share,” he adds.

Eileen Lynch, a Seattle-based paralegal, understands the reluctance to have such a conversation. Diagnosed at 22, Lynch avoided dating while she struggled to accept her condition. “I shied away from dating because I didn’t want to burden someone,” she recalls. “Then, when I returned to dating, I didn’t have successful relationships because I was so guarded and couldn’t open up.”

But a friend opened Lynch’s eyes to the opportunity she had been given. “He told me that I was actually lucky because I had a built-in meter,” Lynch says. “If someone didn’t want to be with me because of lupus, then he wasn’t good enough for me to begin with.” Lynch decided to put that meter to the test and started dating again, meeting men through friends or on online dating sites.

###

Are you enjoying the article so far? If so and you would like to read it in its entirety, please visit The Dating Game on lupus.org.





February 05, 2008

Become A Media Spokesperson for the Lupus Foundation of America

You can help increase public awareness and understanding of lupus by serving as a media spokesperson for lupus. Members of the news media want interesting and compelling stories about individuals whose lives have been affected by lupus. Here is your opportunity to share your story with members of the news media.

General Rules

  • You must be 18 years or older. (Parents may submit a story about their child.)
  • The story must be about you, not someone else.
  • Tell about your life before you were diagnosed with lupus, the challenges you had to overcome to obtain a diagnosis, how your life has been affected by lupus, and what you believe the future may hold for you.
  • Be brief. Your story should not exceed 500 words (3,000 characters including spaces).
  • Describe something unique about your story that others who are unfamiliar with lupus might find interesting.
To learn more about becoming a media spokesperson for the Lupus Foundation of America, visit the lupus.org Website.


February 04, 2008

Space Still Available for the Lupus Foundation of America's 2008 Advocacy Day: March 10-11, '08

Good morning.

Hope you had a great weekend. Mine was pretty good. Weather here in DC was actually nice over the weekend. Picked up some original movie posters I had framed (I collect them), hung out with some friends, and ... I went to the gym for the first time. I was a little hesitant / self conscious, but then realized no one cared what I was doing, so it was all good. I think this is one resolution I will stick to.

And now to lupus news.

As a reminder, the 2008 Lupus Foundation of America Advocacy Day is fast approaching ... March 10-11, to be exact. By participating, you will join hundreds of lupus advocates from across the United States who will have come together in Washington, DC to take this opportunity to make their voices heard. Advocates will urge Congress to provide more funds for lupus research to find the causes and cure for lupus, and for education and public awareness programs to improve early diagnosis and treatment of the disease.

Registration for the 2008 LFA Advocacy Day is open. Register here for the opportunity to make your voice heard on Capitol Hill.

Sign up to become a lupus e-Advocate to receive updates on how you can participate in Advocacy Day 2008.

Do you want to learn more about the advocacy efforts of the Lupus Foundation of America? Then visit the lupus.org/advocacy Website. If you have any advocacy questions, please contact Sara Chang at chang@lupus.org.

From all of us at the Lupus Foundation of America, we hope to see you on Capitol Hill in March 2008.

Until next time, Wick


February 01, 2008

Lupus Foundation of America Observes February as National Heart Month

Morning everyone ... it's a rainy, dreary day here in the nation's capital. Lots to cover today so my intro will be brief. Just wanted to say how absolutely great it is that LOST is back on TV! It was worth the 8 month wait.

Have a great weekend.

Until next time, Wick

Heart Disease is a Major Complication of Lupus - February is National Heart Month

Heart disease is a major complication of lupus and is now a leading cause of death among people living with autoimmune disease. Individuals with lupus are at increased risk for cardiovascular disease (CVD), which involves hardening of the arteries and can lead to heart attacks or strokes later in life. As the nation observes February as “National Heart Month,” the Lupus Foundation of America is calling attention to this serious complication of lupus, an autoimmune disease that affects an estimated 1.5 - 2 million Americans.

Lupus is a chronic (lifelong) disease in which the immune system fails to tell the difference between foreign invaders, such as viruses and bacteria, and the body’s own cells. The immune system then produces auto-antibodies (“auto” means “self”) which mistakenly attack healthy tissue. These auto-antibodies cause inflammation, pain and damage to various parts of the body, including the heart, lungs, kidneys and brain.

Several studies have provided evidence that inflammation plays a role in heart disease. Inflammation causes a build-up of fatty deposits called plaque within coronary arteries, blood clots, and blockage of blood vessels within the heart -- placing one at increased risk for heart attack.

As the outlook for people with lupus has improved significantly over the past few decades, heart disease and other cardiac problems have surfaced as the most serious long-term risk for people suffering from lupus. Several decades ago, when lupus patients died shortly after developing lupus, the cause of death was often attributed to undiagnosed and untreated lupus. However, when patients lived for years after their diagnosis, the main cause of death changed to atherosclerosis, which occurs when cholesterol and other fatty deposits block the passageways where blood flows to the heart.

In studies that compared a group of women with lupus to a group of healthy women, researchers found that the lupus patients were more likely to have traditional risk factors for heart disease, such as diabetes and hypertension. In addition, these women had an earlier onset of menopause, and had higher levels of unsafe blood fats, including triglycerides and low-density lipoprotein (LDL) cholesterol. These factors are all exacerbated by the inflammation caused by lupus and contribute to the increased risk of coronary heart disease and accelerated atherosclerosis.

However, these factors alone do not fully account for the increased risk. Several factors more specifically related to lupus are proposed to have considerable importance, including chronic inflammation, antibodies that attack proteins that regulate the blood vessels, and therapy, especially corticosteroid use. As a result, researchers suggest that lupus should be considered equivalent to coronary heart disease as a known risk for heart attacks and strokes.

Because concerns about coronary heart disease in lupus patients have increased dramatically, researchers are studying potential therapies to reduce these risks. These include developing treatments that incorporate cholesterol-lowering drugs and aspirin-therapy. Meanwhile, lupus patients can take well-known steps to help lower their risk: lose weight, stop smoking, lower blood pressure, and get moderate aerobic exercise.

How Lupus Affects the Heart

Pericarditis
The most common way that lupus affects the heart is through inflammation of the pericardium, the sac that surrounds your heart. The symptoms of pericarditis that you may experience are sharp pain in your chest and, occasionally, shortness of breath. Pericarditis usually does not damage your heart’s ability to function because it does not directly involve the heart tissue. However, inflammation that is chronic (long-lasting) can scar the heart tissue, which can interfere with the heart’s ability to pump blood.

Myocarditis
Lupus can cause inflammation of the myocardium, the muscle tissue of your heart. The symptoms are chest pain and an unexplained rapid or irregular heart beat. Myocarditis is often seen when there is inflammation in other muscles in the body.

However, myocarditis can be caused by viral, bacterial, and fungal infections. Because lupus itself creates an added risk for developing infections -- especially if you are taking certain immunosuppressive drugs -- you are at increased risk for this type of myocarditis.

Though serious heart muscle disease is not commonly caused by lupus, heart failure can occur if your heart does not have the strength to pump enough blood to the different tissues and organs.

Endocarditis
The endocardium is the tissue that lines the inner walls of your heart and the valves that separate the heart’s different chambers. Lupus can cause inflammation of the endocardium. Lupus endocarditis usually causes the surfaces of the heart valve to thicken or develop wart-like growths (lesions). These lesions can become infected, a condition called bacterial endocarditis. A lesion also could break off and travel to the brain to form a blood clot. Both of these possibilities are potentially very dangerous.

Coronary Artery Disease
The coronary arteries move blood to and from your heart. Over time, fatty molecules and other materials may attach to the walls of these blood vessels and form plaque, which makes the blood vessels narrower and restricts blood flow. This condition is known as atherosclerosis. A decrease in blood flow can cause angina (chest pain). However, if the blood flow to your heart is interrupted -- either by plaque or by a blood clot that develops when plaque breaks off -- you could be at risk for a heart attack.

When you have lupus you are at increased risk for coronary artery disease. This is partly because people with lupus have more risk factors, which may include:

  • hypertension from kidney disease or corticosteroid use
  • elevated cholesterol levels from corticosteroid use
  • type 2 diabetes from corticosteroid use
  • an inactive, sedentary lifestyle due to fatigue, joint problems, and/or muscle pain
However, even after taking these risk factors into account, people with lupus are more likely to develop atherosclerosis. You can help reduce your chances of heart attacks and other complications from coronary artery disease in several ways:

  • control the risk factors
  • control the lupus disease activity
  • talk to your doctor about reducing or stopping your corticosteroid use

Additional Information