Lupus Blog Spotlight: Lupus Ranting

Good morning everyone:

Sorry all was silent last week. I was out of town on business travel and was unable to post anything.

I have a lupus blog I'd like to share with you. It is called Lupus Ranting. It's written by a woman -- Sue -- who lives in Missouri.

Here's a little bit about Sue ... in her own words.

"I was diagnosed with systemic lupus (SLE) in 1992. I also have subacute cutaneous lupus (SCLE). Autoimmune disorders are frustrating and vexing. If you have one (or more) you understand what it’s like. If you don’t and decide to read this blog on a regular basis, you’ll eventually learn something. I’m not sure exactly what but hey, this is a blog after all.

I consider myself lucky. I have a full-time job, health insurance, an understanding employer, supportive family and friends, an amazing son. I created this blog to write about life, friends, family, lupus and an array of stuff."

If you have some time, swing by Lupus Ranting and say hi to Sue.

What does 50 years without a new lupus drug mean to you?

The LFA is still looking for your thoughts on what 50 years without a new lupus drug means to you. To learn more about this campaign, and to take part in it, visit Zero in 50.

That's your lupus scoop for today.

Until next time, Wick

Lupus Foundation of America's "Healthy Eating & Weight Management & Lupus" Chat Transcript Posted Online

Thanks to everyone who attended the "Healthy Eating & Weight Management & Lupus" webchat hosted by Dr. Laura Coleman on Wednesday. It went really well. A copy of that chat transcript has now been posted online.

And, we hope you will join us for the December 10, 2008 webchat. The topic is "Depression & Lupus," and it's hosted by Dr. Al Herzog. Mark your calendars for that.

50 Years Without a New Lupus Drug! What Does it Mean to You?

Share your stories with Congress and Encourage Researchers to Keep Up Their Effort

Thursday, November 20, 2008 will mark an unfortunate anniversary. On that date, it will be 50 years since the U.S. Food and Drug Administration (FDA) last approved a drug specifically to treat lupus.

A half century is a long time to be waiting for safer and more effective treatments for a disease that affects an estimated 1.5 million Americans and at least five million people worldwide.

We need to let Members of Congress know that they must provide more funds to conduct the basic research that pharmaceutical and biotechnology companies need to develop new treatments for lupus. At the same time, we want to express our collective gratitude to the hundreds of researchers and industry executives who have been working tirelessly for many years to bring scientific discoveries from the bench to the bedside.

So what does 50 years without a new lupus drug mean to you?

No one is more qualified to speak out about the need for better treatments than individuals with lupus who have no option but to keep using the old drugs that were approved for lupus when Dwight Eisenhower was still president and can have side effects worse than the primary disease.

How can you help? Share your story!

Please help by sending a two part email message to 50years@lupus.org as soon as possible but before November 20.

In the first part of the email, write a short message (about 150 words) that explains to Members of Congress what 50 years without a new lupus drug means to you. In the second part of the email, write a short note of appreciation that explains to researchers and industry executives how grateful you are for their efforts to develop new safe and effective treatments for lupus.

Please include your first and last name and your city and state in your email. If possible (but certainly not required), please also attach to your email a clear photo of yourself so we can personalize your message.

We will use your email message in several ways to help advance the science of lupus!

1. Deliver your message to Congress. During the LFA’s Annual Advocacy Day, lupus advocates will deliver your story, and the stories of others, to policy makers in Washington, DC. Be sure to include your name and your city and state in your message so we can deliver your story to your Representative.
   
2. Feature selected stories on the LFA website. While we are not able to promise that we can post every message and photo we receive, we will review each one and post as many as possible to our website and in our blog so the public also can learn about the impact of 50 years with no new drug has on people with lupus and their families.
   
3. Share your "Thank You" notes with Researchers and Industry Executives. Today there are hundreds of dedicated researchers and executives from pioneering biotechnology and pharmaceutical companies working hard to advance the science of lupus and to conduct clinical studies of nearly 30 potential new treatments for lupus. We want these individuals to know how much you appreciate their continued focus on lupus.

We Need Your Help Now! Act Today!

Send your message and photo today (or by November 20) to 50years@lupus.org. Then, on Thursday, November 20, visit our website to read the messages and learn how the LFA is taking steps to address this urgent problem.

Ask Others To Get Involved!

Please share this request with others who also have been waiting as long as five decades for a new lupus treatment! Together, we can raise awareness of this issue and urge our elected leaders to provide increased funds for research to find ways to develop safer and more effective targeted therapies for lupus.

It's Flu Season Again! Are You Concerned About Being Vaccinated?

Most people with lupus are able to be vaccinated against a variety of disease with no problems. However, because the immune system of people with lupus may be weakened, they should always talk with their doctor before receiving any vaccine.

Flu Shots and Lupus Patients

Although some vaccines can make autoimmune diseases worse, use of the influenza vaccine (flu shot) appears to be safe in people with systemic lupus erythematosus (SLE). Because the flu shot is an inactivated virus vaccine (not a live virus vaccine), it can be given safely and it is recommended that lupus patients receive a flu shot every year.

Please be aware that the Centers for Disease Control and Prevention (CDC) does not recommend the product "FluMist" for persons with compromised immune system disorders. Moreover, family members should not use this product if they are in contact with an individual with lupus.

Lupus patients should always talk with their doctors before receiving any vaccine.

The influenza vaccine (flu shot) is a highly effective inactivated virus vaccine that is given yearly to those at risk for complications of influenza infection. Several studies conducted in people with lupus who received the influenza vaccine found a protective antibody response, although the antibody levels tended to be lower than in the healthy control group. Side effects were not more frequent and disease flares were not more common. When present, the flares were usually mild.

One person did develop diffuse proliferative glomerulonephritis (a class of kidney disease) following immunization received during a lupus flare; therefore, some researchers do not recommend vaccination during flares. Overall, though, influenza vaccine is considered to be safe and effective in people with lupus.

Invasive pneumococcal infections occur more frequently in people with lupus. The Advisory Committee on Immunization Practices (ACIP) recommends vaccination of all healthy persons older than 65, and individuals between the ages of 2 and 64 who are at increased risk for pneumococcal infection due to certain chronic illnesses or immunosuppressant therapies.

While lupus is not specifically listed, there are clinical situations that are common in lupus that may increase the risk of pneumococcal infection. These include: chronic kidney failure; nephrotic syndrome; dysfunction of the spleen; diabetes mellitus; and exposure to long-term systemic corticosteroids and alkylating agents.

Despite this, the vaccine is highly effective in the majority of lupus cases. Patients may be revaccinated every six years, more frequently in those with a lengthy antibody response.

As with most vaccines, the possibility of vaccine-related worsening of lupus activity has been a theoretical concern. There have been occasional reports of lupus flares following pneumococcal immunization, but large studies have not demonstrated a relationship.

Read more about Vaccinations and Lupus

Join the LFA's Webchat Wednesday, November 12. "Healthy Eating & Weight Management & Lupus" will be hosted by Dr. Laura Coleman.

Reminder -- the Lupus Foundation of America's Webchat is Wednesday afternoon, November 12, at 3 p.m. Eastern Time.

The LFA welcomes Dr. Laura Coleman, who will serve as the guest expert for the Healthy Eating & Weight Management & Lupus chat.

Dr. Coleman is a registered dietitian who received her Ph.D. in Nutritional Sciences from Tufts University School of Nutrition. Her early work focused on metabolic changes in people with rheumatoid arthritis, and she later began work on metabolic changes in people with lupus. She is a member of the Lupus Now Advisory Board for the Lupus Foundation of America (LFA), as well as a member of the Materials Review Panel of the LFA Education Committee. She has published numerous articles on diet and rheumatic disease and is the editor of a new textbook entitled Nutrition and Rheumatic Disease, published by Humana Press.

Dr. Coleman's areas of interest include nutrition and childhood obesity.

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.

Check Out the Updated Advocacy & Legislation Section on Lupus.org

Good morning everyone ...

Hope this finds you doing well. I wanted to highlight an updated section of content on the lupus.org website ... the Advocacy & Legislation area.

The LFA Government Relations team is responsible for federal, state, and international legislation and issues that affect people with lupus. They work with Members of Congress at the federal level, and with LFA chapters at the state level to raise awareness and advocate for research funding.

Let me share some of those updates with you.

Legislative Issues & Successes
There are many important government relations issues that affect people with lupus. They include: the Lupus REACH Amendment; Fluorescent Light Bulbs; H.R. 6331, the Medicare Improvements for Patients and Providers Act; and Appropriations for Lupus (CDC, OWH, and DoD).

You can also read about the Legislative Priorities for FY2009.

Become an e-Advocate
Take action on issues that matter and stay informed about important policy issues.

Advocacy Day
Share your story with Members of Congress in person. Come to Washington, DC, each spring!

Advocacy Toolkit
The Advocacy Tool Kit provides information for LFA e-Advocates on how to be a voice on Capitol Hill for people with lupus and their families.

State Advocacy
Learn about state and local advocacy initiatives.

That's your lupus scoop for today. Have a great Wednesday.

Until next time, Wick

Lupus Blog Spotlight: Despite Lupus

Good morning everyone:

It's been a while since I've done this, and so I would like to share a lupus blog with you. It is called Despite Lupus. It's written by a woman -- Sara -- who lives here in the metro Washington DC area ... Alexandria, Virginia to be exact.

Here's a little bit about Sara ... in her own words.

"A little more than 7 years ago, I was diagnosed with Systemic Lupus Erythematosus, or SLE. I had been married less than 6 weeks, was at a highpoint in my career in television production, and had little interest in letting a chronic illness upset my plans for the future. Lupus had a different idea, and while I fought to keep hold of the life I'd known (demanding, yet fulfilling career, busy social life, packed vacation schedule), after four years of running my body into the ground, I couldn't take it anymore. I was fighting life, instead of living it.

Over the course of about two years, I downshifted almost every aspect of my life. I quit my job and made it my number one priority to get myself back in good health. I'm proud to say that I've reached my goal, but work each day to maintain that healthy lifestyle.

Today, I am living well, despite lupus!"

If you have some time, swing by Despite Lupus and say hi to Sara.

That's the lupus scoop from my end.

Until next time, Wick