Nicole’s Challenge with a Lupus Communication Gap

On Tuesday, March 20, Human Genome Sciences and GlaxoSmithKline released the results of a new survey highlighting a communication gap between people with lupus and the people who care for and about them. Read the LFA’s response here.

Nicole has shared with us her experience with the communication gap between people with lupus and people who care for and about them below:

Knock on wood, for most of my lupus journey, I have fallen into the ‘perfectly healthy’ appearance. My major health issues have been leg and joint pain and the butterfly rash across my face (when I’m tired). I graduated from college and am able to hold a full time position. I hang out with friends and family on a regular basis and I enjoy staying active with yoga, running and biking.

Over the years, it has been a challenge for me to express to people that I do have lupus – to be honest, I’ve kept it quiet for the most part. I didn’t want to be the girl with the disability or disease – I wanted to be me. Recently, I explained to a few people that I have lupus. Their automatic response, “But you look healthy?” I simply reply, “Lupus is a very complicated disease, you can have kidney failure or joint pain. Every case is very different, there is no specific list of symptoms.” Unfortunately lupus does not win the popularity contest either. Most people have never even heard of lupus, which is another challenge when explaining the disease to people. I do the best I can and learn from it.

My family members and close friends have been with me since my diagnosis (age 16). It was hard at first, no one knew what lupus was and everyone deals with these things differently. Through the years, we’ve learned to accept it, deal with it and try to live a normal life. Every once in a while, I still a get a random question from them. That’s ok, I am happy they are wanting to learn about it.

This has been a very long and ongoing process. Even to this day, I learn new things about Lupus. I was a teenager when diagnosed, and I had no idea what was going on. I wanted to live a normal life and for the most part I have. Having lupus for 10 years, you learn how to be patient when explaining it and try to be as clear as possible.

I am learning to be more open with people and would like to share as much information as I can. I still tense up when I tell someone new, but become more comfortable each time as well. As I said earlier, this is an ongoing process, a learning one at that!

Introducing the Newest LFAheartland Blogger: Nicole

We are so pleased to be introducing everyone to a wonderful voice for lupus. Nicole is going to be the newest addition to our blogging team. From time to time she will be updating us on her personal battle with lupus and her thoughts about relevant lupus news. We believe that Nicole is an inspiration and that her story and thoughts have a lot to offer to the conversation. Read her story below:

Hello! My name is Nicole, I am a 26 year old living in Missouri. I was diagnosed with Lupus when I was 16. It has been quite an experience but I am proud to say happy 10 years and counting. I received great news (again!) during my recent doctor’s appointment – I am still in remission. It hasn’t always been smooth sailing, but with immense support from my family, friends, boyfriend and a doctor I owe my life to, it has all led me to live a ‘normal’ lifestyle and keep a positive outlook today.

I graduated from the University of Central Missouri with a degree in Communications and am currently a marketing assistant for a business supply company in Westport.

I have been a volunteer for the Lupus Foundation for a few years. I was a public relations intern for the Kansas City Chapter in the summer of 2009 and have been a Walk for Lupus Now team leader many times.

I am honored and excited I get to contribute thoughts, experiences and stories with you along the way. A day in the life of a lupus patient is always unknown. Hope you enjoy.

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

Caucus will work in collaboration with Lupus Foundation of America

(Tuesday, February 7, 2012-Washington, DC) 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.

Lupus is a chronic autoimmune disease that affects an estimated 1.5 million Americans.  Approximately, 90 percent of those with lupus are women, but men and children can also develop lupus. Lupus strikes without warning, has unpredictable, sometimes fatal effects, and has no known cause and no known cure. Lupus is also difficult to diagnose, and on average it takes an individual four years and three doctors to get an accurate diagnosis.

“The Lupus Foundation of America works tirelessly each day to improve the quality of life for all people affected by lupus.   A Congressional Caucus is central to our advocacy efforts to raise awareness of lupus and bring lupus to the forefront of the nation’s health care agenda.” said Sandra C. Raymond, President and CEO, Lupus Foundation of America.   “On behalf of people with lupus, we are so thankful to our Congressional champions for recognizing this need and working together with us to spearhead the Caucus that will help ensure all Members of Congress and their staffs are educated about the needs of people with lupus.”

“I hope that by forming the Congressional Lupus Caucus, we can improve education in Congress about this devastating disease, for which we have no known cause or cure.  By supporting lupus research and increasing awareness, we can work to improve the quality of life for people with lupus and their families,” said Rep. Tom Rooney (R-FL).

“As a cofounder of the Congressional Lupus Caucus, I am incredibly excited to work with my bipartisan colleagues to increase awareness and understanding of this often debilitating disease,” said Rep. William Keating (D-MA).  “A number of residents in my district feel the impact of lupus each day; yet, one of the biggest challenges facing us is that we do not have hard statistics on the number of people in Massachusetts that are actually affected by this disease.  I am hopeful that the work done by this Caucus will bring much needed answers to residents in our local communities struggling with lupus, provide them with insight as to the research the Centers for Disease Control and Prevention is currently conducting, and give them greater hope for their future.”

“I am proud to be part of the Congressional Lupus Caucus.  Lupus is a disease that is not only difficult to diagnose, but also unpredictable in its effects on the body.  Sadly, more than 90 percent of those affected with Lupus are women,” said Rep. Ileana Ros-Lehtinen (R-FL). “Lupus primarily affects young women in their child bearing years and can interfere with a woman’s ability to work, have or raise family, or in some case even care for herself.  These young women often feel invisible, alone, and too often their voices go unheard.  I look forward to working with my Congressional colleagues and the Lupus Foundation of America as we work to better understand this debilitating disease and give a voice and hope to its sufferers and their loved ones.”

“It is an honor to serve as co-chair of the Congressional Lupus Caucus. There is little awareness of lupus and its impact on an estimated 1.5 million Americans,” said Rep. Jim Moran (D-VA) “This disease, disproportionally affecting women, needs greater attention. Our goal will be to increase understanding of this chronic disease and examine ways to support researchers’ efforts to identify, treat and to hopefully one day find a cure.”

The Caucus is currently recruiting members. Representatives Tom Rooney, William Keating, Ileana Ros-Lehtinen, and Jim Moran will serve as co-chairs. Click here to read more about the Caucus.

2011: A Year of Firsts

2011: A Year of Firsts Ushers in New Era

For Advancing the Science and Medicine of Lupus

LFA’s Top Ten Achievements in Lupus Research, Education, and Advocacy

The Lupus Foundation of America (LFA) is celebrating a year of historic lupus firsts generated during 2011 that have contributed to advances in the science and medicine of lupus, improved awareness of the disease, and heightened understanding of lupus and its impact.

#1–First Lupus Treatment Approved in More than 50 Years

After waiting more than five decades, people with lupus applauded the U.S. Food and Drug Administration’s decision to approve BENLYSTA®, the first drug ever developed specifically to treat lupus. Benlysta is the first entry in what is expected to become an arsenal of new, safe, effective, and tolerable lupus treatments.

#2–Lupus Flare Defined, Published Provides Valuable Tool for Clinicians and Investigators

The journal LUPUS published the first-ever global definition of a lupus flare, the Lupus Foundation of America Flare Definition (LFA-Flare). The flare definition was the result of a four-year worldwide initiative lead by the LFA involving more than 120 lupus experts from 11 countries, the pharmaceutical and biotechnology industries, and federal agencies. The definition will provide a valuable tool for evaluating the effectiveness of potential new treatments for lupus.

#3–Analysis Takes Tough Look at Why Treatment Trials Fail

The LFA released early data from the first-ever study to use pooled data from industry-sponsored lupus treatment trials. The findings showed that background medications taken by individuals enrolled in these trials greatly impacted trial outcomes. The initial conclusions were presented to lupus clinicians and researchers during the American College of Rheumatology Annual Scientific Meeting, and to an elite group of researchers at a landmark meeting on lupus biomarkers sponsored by the Food and Drug Administration. The LFA initiative, known as the LFA Collective Data Analysis Initiative (LFA-CDAI) seeks to provide insight and identify trends from previous lupus clinical trials in an effort to improve the design of future trials required to build a full arsenal of new therapies for lupus.

#4–More than 20,000 People Unite to Further Lupus Clinical Studies

The LFA Center for Clinical Trials Education (LFA-CCTE) served as a resource for more than 20,000 people interested in lupus clinical trials and helped connect potential volunteers with studies in their areas. Approximately 500 volunteer opportunities at nearly 30 different clinical studies were available across the United States during 2011, demonstrating expanded efforts by industry, academic and medical institutions, and clinicians to help provide more lupus treatment options.

#5–Research Discovers More People Have Lupus than Previous Estimates

Early data from the Georgia Lupus Registry (GLR) indicates higher overall prevalence of lupus and a significantly higher incidence of lupus among black women than has been reported previously in the scientific literature. The GLR is part of a broader national epidemiological study on lupus that has received more than $18 million in federal funding as a result of LFA advocacy efforts.

 

#6–Lupus Flares Infrequent During Pregnancy for Most Women with Stable Lupus

Women with lupus who are considering becoming pregnant received reassuring news from a large study which found that most women with stable lupus or only mildly active disease experienced infrequent flares during their pregnancies and delivered healthy babies. This study is significant since lupus predominately develops among young women of childbearing age.

#7–Lupus Voices Captures National Spotlight as Part of Multimedia Outreach Efforts

The LFA launched Lupus Voices Across America™, a new Web-based community for people with lupus to share what they want the public to understand about lupus. Celebrities such as Julian Lennon, Eduardo Xol, Busy Philipps, Kalenna Harper, Chris Wilcox, and Whoopi Goldberg also helped LFA efforts by educating their fans about lupus. Their support helped generate record visits to the LFA’s lupus.org Web site during Lupus Awareness Month in May.  Traffic to lupus.orgapproached four million visits during 2011, placing it among the top disease-related sites on the Internet. In addition, The Ad Council reported that total donated media for the national lupus awareness campaign, “Could I Have Lupus?” surpassed $67 million in 2011. In all, LFA media outreach during 2011 generated nearly 100 million impressions.

#8–Critical Research Studies Help to Advance the Science and Medicine of Lupus

In 2011 the LFA supported lupus research studies in critical areas, including cutaneous (skin) lupus, pediatric lupus, stem cell transplantation, and neuropsychiatric lupus (affecting the brain and nervous system). The LFA also led efforts to help secure millions of dollars in additional federal and state funding to support studies on lupus, including work supported through the National Institutes of Health, the largest single source of funding for lupus research. LFA efforts also included helping secure an additional $4 million during 2011 for lupus studies funded through the Department of Defense Peer Reviewed Medical Research Program and the U.S. Centers for Disease Control and Prevention.

#9–Lupus Information Provided to More than 200,000 Individuals

The LFA and its national network assisted approximately 200,000 individuals by providing information about lupus, referrals to physicians, and support services. The LFA also debuted new educational materials, produced audio podcasts about lupus research, sponsored teleconferences and symposia on living with lupus, and published LUPUS NOW®, the only national magazine focused exclusively on lupus.

#10–LFA-Funded Research Presented at 2011 ACR National Meeting 

Data from several studies funded by the LFA’s National Research Program were presented during the 2011 American College of Rheumatology Scientific Meeting, including research on male lupus, pediatric lupus, quality of life issues, lupus diagnostic criteria, lupus biomarkers, and neuropsychiatric lupus. The studies are critically important to advancing the science and medicine of lupus, and improving the quality of life for individuals affected by this unpredictable and potentially life-threatening autoimmune disease.

About Lupus

Lupus is a chronic autoimmune disease in which the immune system is unbalanced, causing inflammation and tissue damage to virtually any organ in the body. Lupus can be unpredictable and potentially fatal. An estimated 1.5 million Americans and at least five million people worldwide have a form of lupus. Its health effects include heart attacks, strokes, seizures, miscarriages, and organ failure.

About the Lupus Foundation of America (LFA)

The LFA is the nation’s foremost nonprofit voluntary health organization dedicated to finding the causes of and cure for lupus, and providing support, services, and hope to all people affected by lupus. The LFA and its network of chapters, branches, and support groups conduct programs of research, education, and advocacy.

Ask Congress to Preserve Vital Funding for Lupus Programs

As the U.S. House and Senate make their final decisions on funding for the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC), we need your voice to ensure programs vital to people with lupus are preserved.  Federal investment in biomedical research at the NIH benefits people with lupus every day.  And the National Lupus Patient Registry Project, funded by the CDC, is seeking answers to key questions that can help researchers better understand and measure disease burden and help incentivize investment in the development in new, safe and effective therapies for lupus. 

Take Action today!  Click here to e-mail your members of Congress and urge them to preserve funding for the NIH and CDC.  Research advancements are critical for better understanding the causes and finding a cure for lupus, and we cannot afford to stall progress.

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

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

LFA, Heartland Joins the Bloggosphere

Hey everyone, and welcome to the Lupus Foundation of America, Heartland Chapter’s (LFA, Heartland) blog! We are very excited to dip our toes into the social networking pool, by finding new ways to engage people who have an interest in the LFA. At the same time, we can introduce new people to us. We will use this tool to talk about issues that have a direct impact on those of us affected by lupus and to share our lupus stories.

One great – not to mention important – moment has happened this week when Bruce A. Beutle, Jules A. Hoffmann, and Ralph M. Steinman received the 2011 Nobel Prize in Medicine for their revolutionary discoveries of the immune system that have contributed to key advances in the understanding of and treatments for autoimmune diseases, such as lupus.

As most of you reading this either have lupus, or know someone who has lupus, you know that lupus is a widespread, chronic, and life-threatening autoimmune disease that can damage virtually any organ system in the body. Approximately 1.5 to 2 million Americans have lupus. Of particular concern is the unexplained prevalence of lupus among women and minority populations — the disease affects nine times more women than men, and it is two to three times more common among African Americans, Latinos, Asians, and Native Americans. Unbelievably, only one new drug has been approved by the FDA to treat lupus in more than 50 years!

Click here to learn more about 2011 Nobel Prize winners and the LFA’s research initiative, Bringing Down the Barriers.