As an adult, Kevin has been able to move beyond the anger and pain he carried during his youth, and now channels that energy into something productive – putting an end to lupus. He’s become a resource in his community for those who have been diagnosed with lupus and their loved ones who are beginning the challenging journey with the disease.
“I stopped and asked myself how I could raise money and awareness to make sure that nobody else has to lose their mom. I’ve leveraged all of my networks to help spread the word,” said Kevin.
Kevin first heard of the Walk to End Lupus Now® Chicago in 2015 and immediately knew he wanted to get involved. Within 24 hours of registering for the event, he had already raised $1,000. He believes that his story resonated so strongly with people because he was candid about his experience and it came from his heart.
“I felt such love and support when I started fundraising and sharing my story. Seeing friends and family across the country talk and donate – some people I didn’t even know, it really made me feel like I was making a difference.” --Kevin Davis
The first time Kevin attended the Walk, he said it felt like going to a family reunion, except it was with people he hadn’t met just yet.
“The walk is an incredible experience and you’re surrounded by people working toward a common cause,” said Kevin. “It’s a wonderful way to get people in the community connected and talking about lupus.”
Find a Walk to End Lupus Now event in your area.
This month, we asked Sharing the Journey participants the following question:
I get my social and emotional support from my boyfriend and his mother. The two of them put forth much effort to ensure that I rest, eat when and how I need to eat, and listen to me when I need someone to talk to. This helps me tremendously because I know that if something comes up I have someone that I can lean on. If I need to stay in bed all day, there is someone there that can handle the things at home. They encourage me, motivate me, and show daily how proud they are of me, and that drives me. I really do not know what I'd do without them. – Kayla B.
My family and friends are my essential people. This has always been the case. However, I have also found much needed support in "chronic friends" that I have met online. These relationships have been cultivated, and I am lucky to have met many of them in person. It is sometimes difficult to understand how people that started out as strangers have become so instrumental in helping me get through illness. However, they understand it firsthand. I even have a group text with several of them. When I found out I needed surgery, aside from my immediate family, they are the first ones I told. "Hey guys, I'm going to be titanium, too!" – Leslie R.
Finding a solid support system is so essential, but sometimes difficult to do. With a disease like lupus, most people do not understand the enormity of symptoms you go through on a daily basis because you “look normal.” I have also found that I am my own worst enemy when it comes to opening up about my symptoms and asking for help. I get tired of explaining what lupus is or fear that people will just be annoyed with the amount of complaining I could actually do. Over the years, I have found that my husband is my best support. Living with me day in and day out, and seeing what I go through, he has perspective. As my kids age, they too know when mom is not feeling good, and when they need to help out a little more. I also have a couple good friends that I am able to vent to with no limit, they offer emotional support in a way my immediate family cannot. My circle of support is small, but very crucial when times get tough, and I appreciate every one of them for lifting me up. – Roxi A.
I get my emotional support from my entire family. All of them are my support team. I also receive emotional support from my rheumatologist. She is my life saver. Their support encourages me to do my best and keep up with my daily routine, in order to prevent lupus flares. – LaTrease B.
I would definitely say my biggest emotional support is my mom. She was diagnosed with lupus before I was, so she initially taught me how to handle the disease day-to-day and warned me about things that could be dangerous triggers. She is still my rock and emotional support when the going gets tough and I really love sharing my feelings and pains with her because I know she gets it. Besides my mom, I have a close knit group of friends at school who share my Christian beliefs and are a constant source of help and encouragement. I like having friends who don't suffer from a chronic illness because they help me to look beyond my disease at other things life has to offer. They are also very sensitive to my physical well-being and will often encourage me, even when I don't want to hear it, to rest and take a break. – Becca M.
I would say that my family and friends are my support team. They are great in helping me get through tough times when I am worried about a hard situation. It is always helpful to have people you can count on when you're unsure about a situation. I am lucky to have them because I would not be able to go through this journey alone. – Kylie K.
At this point, most of my human support comes for my spouse and places where I volunteer. A lot of the other support comes internally as I tend to be more internally guided at this time. I certainly love being around people, but am fully nourished by giving at this time. I have struggled with the medical world so much, it seems that I am primarily guided there and I have had to stay very clear with what is happening with my own body so I can report ahead of time as early as possible what’s going on with my lupus. I also have two siblings that I have strong relationships with and can get in touch with at any time and feel a totally open connection with. There are a few other essential people in my support system including a dear friend I met in the mid 80's who I have stayed connected with even when I moved, as we have remained very close and continue to see each other often. I have also established a spiritual community here which is not a very deep one, but there are several folks I feel connected with and several who I have done some healing work with and I also do some work with homeless families through that group which is a nice connection for me. I am also still connected with folks that I was around back in Madison where I was first diagnosed though that is not as strong a connection as it used to be. – Betsy H.
When you are first diagnosed with lupus, it may be hard to maintain all your old friendships—but the ones worth keeping may become even closer. Your real friends are the ones who will offer to help you out in little ways, listen to you when you talk about your lupus, and understand when you need to stay home.
Check out Best friends: How close friendships help with coping for stories about how real people with lupus find support from their friends.]]>
Danica raised funds and ran with the goal of raising awareness for lupus, since her family was not aware of the disease until her sister's diagnosis.
Erica spent most of her young life in and out of hospitals as doctors tried to diagnosis her illness. In October 2016, Erica suffered severe chest pain from an infection and the next month, she went into cardiac arrest and was put on life support. She was taken off of life support on November 25, shortly after being diagnosed with lupus.
When her family was told that she had lupus, they realized the importance of raising awareness and educating people so that they can recognize the signs and symptoms earlier and prevent serious health complications.
“It was devastating to know that my sister had lupus and we never even knew about the disease. So much of her pain and suffering could have been prevented if we had been aware of the signs and symptoms of lupus,” said Danica.
The opportunity to get involved in the community through training and racing in the recent Half Marathon became part of the healing process for Danica and Ashley, who were not runners before training started. In fact, Danica had never run more than five miles. She describes the experience as ‘emotionally staggering’ to be able to run for people who cannot participate. Danica felt her sister’s presence with her the day of the race, and said that she could not have gotten through the experience without thinking of her all day.
“Erica was fiery and feisty, she was one of the greatest people I have ever known – She was truly one of a kind and life feels very empty without her,” said Danica.
The race also gave Danica and Ashley an opportunity to feel truly connected to the lupus community. They realized that they were not alone, participating with several other people who have been devastated by the disease. Team Make Your Mark Coach Dan Walmer served as a source of inspiration to fight hard by being transparent with his journey as a runner who has lupus and refuses to let the disease take over his life.
Danica’s hope is to build a bigger team for next year’s race and continue running, fundraising and raising awareness for lupus in her sister’s memory.
“Nothing compares to crossing that finish line thinking about my sister Erica."
"I was so triumphant and proud to give back and be a part of this great community of people who understand my journey,” said Danica.
To learn more about the program and sign up to participate in a future race, please visit http://www.lupus.org/action/join-team-make-your-mark.]]>
View a timeline of LFA's efforts to secure lupus-specific research funding at the Department of Defense (PDF).
This is a critical step in the legislative process and means that this funding is one step closer to becoming law.
The Senate still must act on its version of the Fiscal Year 2018 Department of Defense Appropriations bill, which includes funding for the Lupus Research Program. If the bill is enacted, it will bring total funding for the LRP to $10 million! We will keep you updated as the legislative process continues.
In the meantime, we want to let you know that the Lupus Foundation of America is working closely with the Department of Defense and others within the lupus community to help provide strategic direction to the LRP. We're focused on ensuring that the new funding is directed to research projects that can make the most difference in the fight against this disease and the search for new treatments.
As the program moves forward, keep an eye out for additional updates about this vital new source of lupus research funding.
Thank you again to all lupus advocates for everything you have done to help make this program possible! You have made a difference!]]>
It’s also the time of year for warnings about the sun’s damaging ultraviolet (UV) radiation. While the summer months are most important, did you know it’s also important for people with lupus to protect themselves from UV all year ’round? And not just outdoors—indoor fluorescent lighting and tanning beds can cause damage, too.
That’s because there are two types of UV that can affect us: UVB is the one that causes sunburn, and UVA can go through window glass and can come from indoor lighting. Researchers have found that lupus can be activated by both types of UV radiation, and it’s important to understand the difference.
But with a combination of protective clothing, correctly used sunscreen, and a good understanding of how UV can affect you, you can be sun- safe, no matter what season it is.
We've gathered the most important things you need to know for year 'round protection:
Dr. Susan Manzi, Chair of the Department of Medicine of Allegheny Health Network in Pittsburgh, and also Medical Director for the Lupus Foundation of America said, “The new injection formulation of Benlysta will provide a convenient option for our patients who prefer to administer the medication at home instead of taking the time for a one hour infusion at a remote location. We are always looking for better ways to serve our patients and this is a major step forward.”
Benlysta was first approved as a monthly infusion therapy for lupus in March 2011. Patients on this original formulation had to travel to an infusion center to receive the therapy. GSK’s Benlysta SC will be self-administered as a weekly injection into the fatty layer of tissue just under the skin. It will be available as either a single-dose pre-filled syringe or from a single-dose auto-injector.
Benlysta SC is expected to be available by the end of August from specialty pharmacies. More information is available from the GSK media release. GSK will post additional information about Benlysta SC soon at benlysta.com.
Learn more about Benlysta on the National Resource Center on Lupus website.]]>
The Committee’s action is a significant victory considering the President’s budget request to Congress proposed to eliminate both lupus programs and cut NIH funding by $6 billion. It also demonstrates the power of lupus advocates as these funding requests were top priorities during the meetings that lupus activists held with more than 200 Members of Congress during last month’s Policy Summit.
Importantly, the bill approved by the Committee includes “report” language that provides guidance on how CDC and OMH should utilize the funding. Specifically, the bill encourages CDC to develop lupus self-management programs to improve quality of life and to study pediatric lupus and the burden of the disease in children. The bill also directs OMH to work with the lupus community to expand the development of tools in order to increase minority participation in clinic trials.
The bill now heads to the full House of Representatives for a vote and the Senate still must act on its version of the legislation. However, if enacted into law, the bill would bring total funding for the registry to $56 million and more than $14 million for the lupus program at OMH.
Thank you to the thousands of lupus activists whose advocacy during the Policy Summit and throughout the year has helped to make these victories possible! We still have more work to do so please keep an eye out for our advocacy alerts and updates.
Senate Action on Health Reform
During last month’s Policy Summit, lupus activists urged Congress to support health care reform that ensures people with lupus have access to affordable and quality care. Thanks to our outreach and the outreach of others from throughout the health care community, it appears that the U.S. Senate does not have the votes to pass the Better Care Reconciliation Act (BCRA), a bill that would increase the cost of coverage, eliminate essential patient protections, cut Medicaid and result in millions of Americans losing their health insurance. However, it’s still possible that as soon as next week, the Senate may vote on a modified BCRA or to repeal the Affordable Care Act (“Obamacare”) and replace it with a new health reform plan at a later date.
Therefore, the Foundation continues to work to make sure that any health care legislation passed by Congress will:
While the next steps in the health reform debate are unclear, it is clear that your advocacy and the advocacy of thousands of others across the country have forced Congress to revisit these vital issues. We will keep you updated and let you know when your outreach to Congress can make the most difference on this issue, which is critical to ensuring that people living with lupus have access to the care they need, when and where they need it.
Thank you again for your tremendous efforts in the fight against lupus!
Have you looked into participating in research, and if so what was the experience like and did you end up enrolling in the study?
Yes. I've done four clinical trials and a few observational studies. My personal preference is for Phase 3 studies, but I have done one Phase 2. For science! – Elyse R.
I have looked into research, and have participated in several studies. None have been clinical trials, but they have been research studies involving using my information, taking surveys, etc. I am not eligible for a lot of the research as I have both lupus and rheumatoid arthritis. In my experience, the research I have taken part in is unobtrusive and has not involved a lot of effort on my part. In terms of clinical trials, I would participate if my condition ever became such that I needed to. – Leslie R.
I enrolled in the Benlysta drug trial study before it was approved and participated in a lupus research study on genetics. – Sara P.
I’ve looked into participating in lupus research studies as an adult, but have not been able to find anything that I am qualified to participate in around the area that I live. However, from ages 11-13 I participated in a study that involved taking an unknown (to me) medication and repetitive ultrasounds of my neck. I honestly do not remember the purpose or the name of the study. My ultrasounds were always scheduled with my Rheumatology appointments so it was never too much travel and I was paid! It was a great experience and I would be willing to do it again if the opportunity presented itself. – Kayla B.
I have looked up opportunities to participate in lupus research. Although I haven't participated in any drug studies, I have taken several questionnaires and the process was very simple. I found out about these studies through the LFA newsletter, and I signed up for the surveys through the LFA website. Depending on how extensive the questions are or if you are part of the demographic that the study is targeting, the questions can take anywhere from 3 minutes to 30 minutes. Sometimes, someone from the study will call you with follow up questions if they are specifically interested in your case. All in all, I think volunteering to participate in lupus research is a way all of us can collaborate to help end lupus for everyone. – Becca M.
I have been screened for two, but didn't meet the disease profile the researchers needed. I will keep looking for opportunities to participate.
– Anne B.
I had the opportunity to participate in the Hematopoietic Stem Cell Transplant study for Lupus at Northwestern University. I am about 10 months post-transplant and have been in remission for the full duration post-transplant. I cannot begin to express the way the transplant has improved the quality of my life. I was at a critical point in my disease course, near death, and the transplant has given me a med and pain free lifestyle. The treatment is grueling, but the outcome is well worth the hardship of the treatment. – Kristin L.
I have never participated in a clinical trial. However, I've always been curious about them. They sometimes seem "out of reach" or difficult to get a lot of information. My doctor has also never mentioned them to me...if the opportunity came up, I would consider it. – Roxi A.
Yes! I participated in the Illuminate study and just enrolled in the Lift study. – Deb J.
Participating in Clinical Trials
Clinical trials are an important part of bringing new therapies to the market—they prove whether or not a drug is safe and effective and pave the way for approval by the U.S. Food and Drug Administration (FDA). Researchers need many people to take part in clinical trials, so by participating in a trial you can make a real difference.
If you have lupus and are ready to learn how you can contribute to research, join the Research.forME Lupus Registry. This registry stores information about individuals with lupus, which researchers can use to learn more about the disease and to notify you about clinical trials.
His running resume includes 40 marathon finishes and several ultramarathon finishes, and he has coached several hundred runners.
Dan began running in 2008 to lose weight and manage his type 2 diabetes. While he did not enjoy running, he loved the physical benefits – he lost 80 pounds within a year and managed his diabetes.
He continued to run for the next eight years, finishing several short distance races, marathons and ultramarathons. He became a certified coach through the Road Runners Club of America and began coaching with a local running club in Houston, Texas. He began to understand the power of running to transform lives.
In January 2016, Dan began experiencing concerning health complications – fatigue, achiness, and low-grade fevers. A few months later, he passed out at work and ended up in the emergency room with dangerously high blood pressure.
After extensive tests, doctors found life-threatening signs of kidney failure. He soon had a diagnosis – lupus.
He had stage IV lupus nephritis (stage five could result in permanent and irreversible damage) and would need dialysis and, eventually, a transplant. Doctors put him on an aggressive treatment regimen: low-dose chemotherapy, high-dose steroids, antimalarial drugs, blood pressure medications and antibiotics.
Fast forward one year, Dan says the biggest health challenge he struggles with is extremely high blood pressure. Dizziness and fatigue affect his ability to pursue his passion of running, although he has been cleared to exercise.
He has learned to lower his expectations toward running and racing. The other health challenge that has an impact on his running performance is the dramatic fluctuation in his weight, which for the past year has been as low as 198 pounds and as high as 235 pounds. He loses weight while on chemotherapy and gains weight when he is taking steroids. He continues to struggle with kidney function and is on heavy steroids to counteract the effects of the disease.
Yet he asserts that running is what has kept him healthy and gave him the confidence to strive for big goals, in addition to the deep and loyal life-long friendships. He describes running after his lupus diagnosis as the passion that woke him up early each morning, anxiously awaiting the miles that were ahead of him.
Coaching has given Dan the opportunity to channel his energy into helping others follow their goals and succeed. As Dan has learned through many hard-fought miles and years of struggling with health challenges from lupus, setting big goals and breaking them into small incremental steps that can be achieved over time can be a transformative life experience.
Dan loves helping seasoned runners improve, but his passion is coaching those who are new to running, especially when they are running for a personal cause. His love for coaching stems from a desire to make a positive impact on people’s lives.
He also is passionate about supporting runners who are trying to raise funds to support lupus research that will save lives. He has raised more than $11,000 so far through his personal fundraising efforts.
Through his coaching, he shares his personal experiences as a runner applying a positive attitude and re-prioritizing in order to achieve goals. He also uses this optimism and problem-solving mentality to tackle and learn from setbacks along the way since regardless of the training program, there will be setbacks that present learning opportunities if viewed from a positive perspective.
It is this attitude that is the motivation behind the Team Make Your Mark training program. Contact us to learn more about the program and sign up to participate in a future race. Registration for our fall races is now open.]]>
Do you access email on an iPhone or iPad using the blue icon with the white envelope? That's the Apple Mail App. There are 2 ways to whitelist a sender.
Mark us as “not junk”
To flag firstname.lastname@example.org and email@example.com as safe senders, find an email from each of these addresses (they might be in your spam folder). You should see a row of icons at the bottom of the screen. Tap on the flag icon on the left side, and select "Mark as Not Junk."
Add us to your contacts
Open an email from the Lupus Foundation of America and select the "From" or "Reply-to" address. From here you’ll see a menu where you can choose to “Add to Contacts”, or “Add to VIPs”. The advantage of “Add to VIPs” is that future emails from us will be added to a special VIP mailbox in iOS Mail.
Here are easy instructions for whitelisting us, whether you use Gmail via webmail or the mobile app.
Getting all future emails from a sender to appear in the “Primary” tab (instead of “Promotions”, or elsewhere) is a quick, two-step process. First of all, drag-and-drop the email message from beneath the tab it’s currently filed under, to the “Primary” tab.
Once done, a message alert will appear with, “This conversation has been moved to Primary. Do this for all future messages from firstname.lastname@example.org?.” Select “Yes”.
On the Gmail app for mobile devices, you can press and hold on the message and select “Move TO”, then add all future messages from a sender to your Primary tab.
There are 2 ways to whitelist a sender in Outlook. The following instructions apply whether you use Outlook 2007, 2010, 2013 or 2016).
Add an email address to your Safe Senders List
Email addresses and domain names in the Safe Senders List are never treated as junk email, regardless of the content of the message. To add us to your Safe Senders List, do the following:
Move a message from us out of your spam folder
Check your spam for messages from us! Right click on the message, select “Junk” and then “Never Block Sender”
For other email clients, simply do a web search for “safe sender list + the name of your email client" (AOL, Yahoo, etc.).
If you’re not already getting our e-newsletter or email updates, why not sign up today? Click the button below (and then add us to your safe senders list!).
Want to get involved and share your story? We invite you to participate in our Sharing the Journey group.
In your own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day. Mostly, we celebrate what makes the lupus community strong by sharing our journey, together.
Feel inspired? Email SharingTheJourney@lupus.org
The additional funding for the Lupus Research Program brings the two-year total for the program to $10 million and comes just two days after the Lupus Foundation of America’s (Foundation) National Policy Summit and advocacy day on Capitol Hill.
During the Foundation’s advocacy day, activists visited over 200 Congressional offices. As those activists were meeting with Members of Congress, thousands of others from 49 different states participated in the Foundation’s Virtual Advocacy Day and sent over 5,500 emails reaching nearly 400 U.S. Representatives and 98 U.S. Senators, all in an effort to urge their Members of Congress to increase funding for lupus research and ensure access to quality health care.
“It’s clear that the tremendous efforts of our lupus activists, this week and throughout the year, have had a significant impact on the Committee’s decision to continue funding for the Lupus Research Program,”
said Sandra C. Raymond, President and CEO of the Lupus Foundation of America.
"This funding is critical to the fight against lupus as it will help us learn what causes lupus and can advance the development of new treatments for our military heroes and the 1.5 million Americans living with the disease. We thank the leaders of the House Appropriations Committee, including Rep. Rodney Frelinghuysen (R-NJ), and the Congressional Lupus Caucus Co-Chairs – Rep. Thomas J. Rooney (R-FL), Rep. William Keating (D-MA), Rep. Ileana Ros-Lehtinen (R-FL), Rep. Eddie Bernice Johnson (D-TX) for championing this funding increase for lupus research. Of course, none of this would be possible without lupus activists making their voices heard."
Beginning in 2003, the Lupus Foundation of America has led the effort to establish a lupus-specific research program at the DoD. A historical timeline of the Foundation’s advocacy to establish the Lupus Research Program can be found on its website.
The bill now moves to the House floor for a vote. The Senate has yet to act on its version of the legislation, which is expected later this year.
Please follow us on Twitter and Facebook, and sign up to become a lupus activist to stay up-to-date on the latest news from Washington and to learn when your outreach to Congress can make the most impact in the fight against lupus.
The lupus activist meetings with their legislators are part of the Lupus Foundation of America’s two-day National Policy Summit.
“The National Policy Summit is the most impactful advocacy event of the year as it provides lupus activists the opportunity to meet directly with Members of Congress to share their daily struggles with the disease, and demonstrate the urgent need to step up the fight against lupus.”
“At a time when health care is top of mind for Congress, lupus activists from all over the country will meet with our nation’s leaders to urge them not only to increase funding for research, but also to ensure they have access to the quality and affordable care they need.”
-Sandra C. Raymond, President and CEO of the Lupus Foundation of America
The National Policy Summit also provides activists with empowering programs and activities including three interactive and educational panel discussions on day one of the event. Panelists include leaders from the Food and Drug Administration (FDA), the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC).
Activists will have direct access to the very leaders who are funding and implementing programs to advance lupus research, education and awareness.
Get Involved Virtually Today!
Following the panel sessions, the Foundation will host an evening Advocacy Awards Reception to honor its Congressional champions whose leadership has made a significant difference in the fight against lupus.
Award recipients include:
The Honorable Rodney Frelinghuysen
United States House of Representatives
Chairman, House Appropriations Committee
Congressional Champion Award
The Honorable Eddie Bernice Johnson
United States House of Representatives
Co-chair, Congressional Lupus Caucus
Congressional Champion Award
The Honorable Bill Keating
United States House of Representatives
Co-chair, Congressional Lupus Caucus
Congressional Champion Award
The Honorable Thomas J. Rooney
United States House of Representatives
Co-chair, Congressional Lupus Caucus
Congressional Champion Award
The Honorable Ileana Ros-Lehtinen
United States House of Representatives
Co-chair, Congressional Lupus Caucus
Congressional Champion Award
In addition to the support from our donors and Board members, we greatly appreciate the grant support for the National Policy Summit from the following organizations:
Washington, DC- June 22, 2017 – The Lupus Foundation of America today announced Dorothy Toran as its newest National Ambassador. After losing her younger sister Weade Williams-Bridges to lupus, Dorothy committed herself to honoring her sister’s legacy by using her voice and platform as a television producer to increase public understanding and support for people affected by this devastating disease.
Weade, who passed away in September of 2016 at the age of 33 due to complications from Lupus Nephritis (kidney disease), spent nearly her entire life battling various autoimmune diseases.
“Every day our family struggles to find peace, purpose and understanding in the inexplicable loss of Weade,” said Dorothy.
“I am committing my voice and influence to raise awareness and advocate for better treatment options and organ donation programs, as well as more federal spending for aggressive lupus research. More must be done to find a cure and finally bring an end to lupus. Lupus will not win!”
In her role as a Lupus Foundation of America National Ambassador, Dorothy will participate in speaking engagements, media interviews, panel discussions and other awareness activities as part of her new mission to ensure lupus will not win.
Dorothy currently serves as The Executive Charge of Production at Sirens Media, a division of ITV America and one of the largest content creators of broadcast television in the world. Under her leadership, major reality television franchises such as Bravo's “The Real Housewives of New Jersey” have thrived.
In addition to her illustrious career in television, Dorothy is a wife and the proud mother of two daughters. She is most fulfilled by her family, and the happiness that she feels in loving them so deeply. There is also a title of which Dorothy is especially proud, humbled and heartbroken to hold. And that is of being a big sister to her younger sister, Weade.
Mike Donnelly, Lupus Foundation of America
Donnelly@lupus.org | 202.349.1162
If you are unable to attend the National Policy Summit in-person, there are plenty of ways you can still participate, such as through our Virtual Advocacy Day (June 27), joining the Summit conversation through our Twitter and Facebook channels, or viewing Facebook Live video of some sessions.
Virtual Advocacy Day: On Tuesday, June 27 lupus advocates unable to attend the National Policy Summit will be invited to participate in Virtual Advocacy Day by sharing their lupus story and sending a customizable message to their legislators requesting they support critical lupus research funding and ensure that people with lupus have access to quality and affordable health care. Please keep an eye out for more details about Virtual Advocacy Day on the morning of June 27.
Follow us on Twitter and Facebook: Starting Monday, June 26, stay informed and learn what you can do to make a difference from home or work. We encourage you to join the lupus advocacy conversation by using our event hashtag #LupusAdvocacy. If you’re on Facebook, please add our advocacy profile frame to show your support.
Facebook Live from the Summit
We are excited to offer live video coverage of several important panel discussions. Please tune into our Facebook page to watch the following sessions on Monday:
Become A Year-Round Lupus Activist
To receive an action alert reminding you to participate in next week’s Virtual Advocacy Day and to continue supporting future advocacy initiatives that elevate lupus on the nation’s health care agenda, please sign up now to be a year-round lupus activist.
Remember, your voice can and will be heard. But it doesn’t happen without action, and Virtual Advocacy Day is the time to take action!]]>
Lupus Foundation of America and American College of Rheumatology launch a new lupus awareness campaign
June 14, 2017—Today, the Lupus Foundation of America (Foundation) and the American College of Rheumatology (ACR) unveiled a new awareness campaign, “Be Fierce.Take Control.™,” designed to educate and empower young African American and Latino women, who are most at-risk for developing lupus.
The goal of the national campaign, which is funded in part by the Centers for Disease Control and Prevention, is to raise awareness of the signs and symptoms of lupus, and ultimately to reduce the time to diagnosis. Early diagnosis and treatment are critical to preventing long-term consequences of the disease. Traditionally, lupus diagnosis in the United States can often take years.
The campaign uses social media, video, digital advertising, and audience engagement to reach these young women and educate them about the signs and symptoms of lupus. The campaign website also provides trusted tools and resources such as the Foundation’s “Could it Be Lupus?” questionnaire so those with symptoms can learn how to take that next step and talk to their health care provider.
The Impact of Lupus
The impact of lupus on young black and Hispanic women cannot be ignored. Lupus is two-to-three times more prevalent among these women. Not only is there more lupus cases among these women, the impact of the disease is often more severe. They tend to develop lupus at a younger age, experience more serious complications, and have higher rates of death.
Data from CDC’s National Lupus Patient Registry shows that non-white women have a significantly higher incidence of lupus and the overall prevalence of lupus is higher than seen in studies prior to 2003.
“Reducing the time to a lupus diagnosis is an organizational priority for the Lupus Foundation of America,” said Sandra C. Raymond, President and CEO of the Foundation. “It is unacceptable that these young women in the prime of their lives often bear the brunt and burden of this disease. Getting these young women diagnosed and treated earlier is critical to reducing health disparities and improving long-term outcomes and quality of life.”
Young African American and Latino women need to know that they can take control of their health and if they are feeling “off,” it could be a sign of something more serious.
“We have been long-time partners with the Lupus Foundation of America in the fight against lupus, and are thrilled to have the opportunity to collaborate on this important campaign,” said Sheryl McCalla, Senior Director of Collaborative Initiatives at the American College of Rheumatology. “We are urging women not only to take control of their own health, but to support the conversation around health in these communities, and to take their symptoms seriously and consult with their health care providers.”
To learn more about the “Be Fierce.Take Control.” campaign and the signs and symptoms of lupus, visit befiercetakecontrol.org.
About the American College of Rheumatology
The American College of Rheumatology (ACR) is an ethically-driven, professional membership organization committed to improving the care of patients with rheumatic disease and advancing the rheumatology subspecialty. The ACR Lupus Initiative® (TLI) is a multi-faceted education program designed to reduce disparities and improve outcomes among people with lupus. Learn more about the ACR’s Lupus Initiative at lupusiniative.org. For the latest news and updates, follow TLI on Twitter and Facebook.
About the Lupus Foundation of America
The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable and devastating diseases, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, we lead the fight to improve the quality of life for all people affected by lupus. Learn more about the Lupus Foundation of America at lupus.org. For the latest news and updates, follow us on Twitter and Facebook.]]>
We just wrapped up another successful Lupus Awareness Month! It always generates excitement among the lupus community. I love seeing the photos of everyone decked out in purple, the stories shared on social media, and what people are doing in their communities to raise awareness and funds for lupus research.
In my work at the Lupus Foundation of America, I have spoken to many people with lupus over the years. One of the most consistent and heartbreaking themes across many of the stories is the often difficult and challenging road to diagnosis that many people experience.
There are many reasons lupus is difficult to diagnose, and it can often take years. Low public awareness and understanding of the disease contribute to this. Our surveys have shown that those who are at greatest risk for lupus know little to nothing about the disease beyond the name. This is important because a person may not realize that the symptoms they are experiencing could be lupus, or how to talk to their doctor about it.
If we are going to change the future for people with lupus, awareness must be a consistent, year-round effort. It cannot be a day, month or a week.
That’s why, we are excited to continue the momentum and give you a sneak peak at our new Be Fierce. Take Control.™ awareness campaign that will be officially launched later this week. The campaign was developed in partnership with the American College of Rheumatology and supported by a Cooperative Agreement funded by the Centers for Disease Control and Prevention. It is designed to educate and empower young African American and Latino women, who are most at-risk for developing lupus.
The impact of lupus on young minority women cannot be ignored. Lupus is two to three times more prevalent among women of color. Not only are there higher instances of lupus cases among these women, the impact of the disease is often more severe.
Young African American and Latino women need to understand how they can take control of their health and know that if they are feeling “off”, it could be a sign of something more serious.
The digitally-led campaign reaches young women through social media, video, and celebrity and influencer engagement. We want to educate this audience about the signs and symptoms of lupus and what to do if lupus is suspected. Our ultimate goal is to reduce the time to diagnosis and get these young women treated earlier, which is critical to preventing long-term consequences of the disease.
You can also play an important role in this campaign. We are asking you to join us in raising awareness by sharing the Be Fierce.Take Control. campaign website with your friends and family. You can also download social media graphics and messages (.zip file) from the campaign website.
More importantly, if you know anyone who is experiencing symptoms that could be lupus, urge them to take control of their health and talk to their doctor. We look forward to sharing more with you in the coming weeks and months.
To learn more visit, befiercetakecontrol.org]]>
In fact, she learned to better manage her health and wellness after her lupus diagnosis.
Alison had a skin rash for approximately one year before being diagnosed with stage IV lupus nephritis in 2014 at age 33. She lost her gall bladder in the summer of 2013 and developed hypothyroidism which caused her to lose her hair and gain weight. Alison started losing kidney function a few months later, in early 2014. That resulted in her eventual lupus diagnosis in June 2014.
Doctors prescribed an aggressive treatment of steroids and immunosuppressants and soon after had a seizure that resulted from multiple drug interactions.
While training has been difficult, setting a goal and achieving it has helped her regain control of her life after her diagnosis.
She struggled with health complications for a couple years before her symptoms began to improve and then last year, she was able to cut back on her treatment regimen and focus on improving her health while in remission.
Alison lost more than 40 pounds and won an 8-week challenge at the gym for losing the most weight of anyone in the program.
She said that while training has been difficult, setting a goal and achieving it has helped her regain control of her life after her diagnosis. Alison describes running as therapeutic, and Team Make Your Mark provides much-needed motivation and encouragement from people who truly understand the challenges and can appreciate the accomplishment.
Her training program has been focused on building mileage and effort gradually to avoid injury and burnout. Alison avoids hard training and instead focuses on gentle progress to minimize stress on her body and make the training program more manageable. She believes that Coach Dan’s guidance and insights in addition to the support of Team Make Your Mark has made all the difference, and put success as a runner within her reach.
After the upcoming Half Marathon, Alison's looking forward to focusing on weight loss and staying in shape to avoid flare-ups in the future.
She is also planning to hike Mount Saint Helens, where she once worked as a park ranger. She last hiked to the summit in 2004 and would like to reach it again later this year.
While her life has completely changed since her diagnosis, she now has the strength to get better and has gained knowledge to better manage her health and well-being.
Interested in setting your own goal while being part of a community of people who like you, are helping to solve the cruel mystery of lupus? Have a family member or friend who is looking for a challenge of their own?
Visit Team Make Your Mark to learn more.
The Sharing the Journey series is by you and for you. In your own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day. This month, we asked Sharing the Journey participants the following question:
What's the one thing you want people who don't know anything about lupus to know?
One thing I want for people who don't know anything about lupus to know is that number one you can't catch it. I am not contagious. Two, it’s not cancer. It’s not like cancer as they are two completely different diseases neither of which I would wish on anyone. Three, just because I don't look sick doesn't mean I'm not. I have spent years of my life trying to be “normal” and it doesn't always work out. I push myself to the limit and then I am forced to recover, so just because I went out last week doesn't mean I can this week. Finally just because I am sick doesn't mean I have to live my life in a bubble or hospital. There is a balance and some days it's easier to find than others. – Michelle T.
People who don't have lupus should at least know that is exists. Before I was diagnosed with lupus I had no idea it even existed. Everyone always hears about finding a cure for cancer or other big problems but never about lupus. This disease is just as serious as those and I want people to know how hard it can be for the people faced with it daily. We need to raise more awareness so this disease can be researched more in hopes we one day can find a cure. – Kylie K.
One thing I want people who don't know anything about lupus to know, is that a lupus patient's "tired" is much different than a healthy person's "tired." This is not to take away from anyone's struggles or levels of fatigue, but with lupus we never know how hard the fatigue will hit us on any given day- mentally or physically. We never know if we will make it to work or school every day during the week, we may have to cancel plans at the last minute because we are just too tired to show up, and we may not always be ourselves when others expect us to be chipper. If you have a friend or a loved one with lupus, please research lupus fatigue. – Kayla B.
I want people to know that there is no cure and limited treatments are available to those living with lupus. Awareness and support are needed to better the lives of those living with lupus. – Andy L.
The one thing that I want people to know is that I am not defined by my diagnosis. While lupus is something that I have to live with for the rest of my life, I will not let it dictate how I live, nor will I let it consume my entire being. We all have the ability to make choices. Every morning, I commit to living the healthiest lifestyle possible because that’s what I know my body needs in order to thrive. Since having been diagnosed a year ago, I have not suffered through a flare nor have I endured any setbacks. I put myself first. When people hear that I have lupus, their initial thought is to feel sorry for me or to make general assumptions that I will not live a normal life. I never want anyone to feel sorry for me. If anything, since having been diagnosed, my life has changed for the better. Moreover, I am positive that it will continue to improve. I have embraced my diagnosis and have utilized it as a new beginning. Living with lupus is more than manageable; it’s about committing to a healthy lifestyle that is best suited to my needs. I choose to take control of my diagnosis and not let lupus define me. – Victoria G.Five people with lupus share what they want people who don’t know anything about the devastating disease to understand.]]>
Givler was diagnosed with lupus in 2009 and tells her story of channeling her frustration with the disease into work as an advocate.
When you first meet Heidi Givler, you are aware of her positive, energetic approach to life. It is only as she begins talking about some of her passions – baking contests and street racing, to name a few – that you realize she is also passionate about lupus, the disease that impacts her daily.
Givler, who lives in Lenhartsville and works in Hamburg, was diagnosed with the inflammatory/immune disease as an adult in 2009.
“But I think I was born with it,” she says, recounting a history of childhood illnesses and responses to stress.
According to Lupus.org, 1.5 million Americans have the disease. Symptoms include dizziness, mouth and nose ulcers, migraines and fatigue. Some patients struggle with sun sensitivity, fevers and trouble with short-term memory. For most, the type and severity of symptoms varies by day.
Lupus is most prevalent among African Americans and women, Givler says, but affects all races and genders. Givler’s mother and two brothers have the disease. Her sister, Cherylanne, died from complications of lupus and scleroderma five years ago.
“People don’t realize lupus is a 'look good' disease,” Givler says, explaining, “You look good, but you feel like crap. It’s like a roller coaster of ill feelings from head to toe.”
At age 51, she must take regular prescription pain medicine to cope with the pain. She notes medicines help quiet symptoms but also cause difficult side effects. She spends about $20,000 out of pocket each year on acupuncture, therapeutic massage, doctor co-pays and over-the-counter medications.
Givler channels her frustration with the disease into work as an advocate. She participates with the Philadelphia Tristate Chapter of the Lupus Foundation of America (LFA), and educates individuals at high schools and community health fairs.
She’s also traveled to Washington, D.C., to campaign for lupus patients.
“When we go to the lawmakers, it is to get laws on the book to help find the cure, because there is no cure for lupus,” she says. “And to get help with the medicines.”
Givler is also a passionate lupus fundraiser, organizing bingo events and participating in cooking contests as a platform. So, she was thrilled when Annette Myarick, CEO of the Philly chapter, invited her to the LFA National Gala in New York City last fall. Givler attended with both of her brothers and they brought with them a framed photo of Cherylanne.
The plated dinner included a silent auction, and Givler bid on – and won - an item donated by Tim Nolan, creative director for the A&E network. The prize was to have an outfit designed by a Project Runway designer.
“We’ve been working on this since the minute I won it,” she says, and she was thrilled when she found out her designer would be Sean Kelly, the winner of season 13 for Project Runway. Givler is a fan of the show.
“I tape it if I’m not here,” she admits. “I’ve been watching it since the very first episode.”
She especially loves show producer/designer mentor Tim Gunn, who himself is a lupus awareness supporter.
“He always says, ‘Make it work.’ And that’s become my motto,” Givler says, because it relates to illness or the workplace. “Whatever you are dealt with in life, make it work!”
Recently, Givler reported to Dietrich’s Men’s Shop in Hamburg. There, owner Les Werley took her measurements for Kelly. Then, on May 13, Kelly called Givler to talk through design concepts.
“He’s so cute sounding with that [New Zealand] accent,” Givler says. “He pretty much interviewed me, asking how I got the prize and what it represents.”
She asked that the dress include purple (her favorite color and also the lupus awareness color), plus peridot green for her mother and pink to honor her sister. Myarick is thrilled with these color concepts.
“She certainly did not have to do that,” Myarick said, “but Heidi is truly a lupus champion! Putting on purple and sharing why helps to make the conversation about lupus, and that leads to awareness.”
“He’s going to do his best to incorporate them,” Givler said. “And I also love his fringe style, but it’s all up to him.”
Givler hopes to get sketches from Kelly soon, and will eventually travel to New York to be fitted for the design. She hopes to wear it one year after she won it, at the 2017 NYC gala.
In the meantime, Givler plans to finish her drag-racing station wagon, celebrate her tenth wedding anniversary and decide the best time to run her next lupus fundraiser. Givler also anticipates walking in a Lupus Walkathon at Desales University on Saturday, June 3.
On average, Myarick said, it takes six years for a patient to get a diagnosis of lupus. For more information about the disease, its signs and symptoms and the medical resources available, visit the National Resource Center on Lupus.]]>
Why is the Advocacy Summit so important? The federal government and industry are the largest sources of funding for lupus research, and increased funding for lupus research is desperately needed. Strong lupus activists like you made these increases possible!
It’s important that all of our voices are heard and we tell Congress to increase funding for lupus research and education initiatives so we can find better treatments and get the answers we need to solve the cruel mystery of lupus.
Who is a lupus activist? You are! A lupus activist is anyone who is passionate about educating elected officials about the impact of lupus on the individual, families, friends or caregivers. Sign up to be a lupus activist.
Watch our videos from previous summits and learn more about what it is like to be a part of this empowering and energizing event.
The first day of the Summit is devoted to training on basic advocacy principles as well as a thorough review of the Foundation’s current legislative priorities. The training includes panel discussions followed by role play that demonstrate best practices for effective meetings on Capitol Hill. The second day is spent on Capitol Hill meeting with members of Congress and their staff discussing the Foundation’s priority legislative issues and to raise awareness of the disease.
If you have lupus or are the parent of a child with lupus, we urge you to make your voice heard by sharing your lupus experience and what matters most to you when it comes to lupus drugs. By donating your time and input to this incredible project you will inform Food and Drug Administration (FDA) officials as they make decisions about future lupus treatments. Please join your fellow lupus activists from all across the nation and take action to help make a difference in the lives of those with lupus!
Learn more online at lupuspfdd.org, a website dedicated to this important initiative. ACT NOW and visit the site TODAY to learn how you can participate, including:
The Lupus PFDD Meeting is being organized by the Lupus and Allied Diseases Association, the Lupus Foundation of America, and the Lupus Research Alliance. Here's what they have to say about this historical event:
“For far too long individuals with lupus have suffered greatly from the lack of adequate treatments, but through the PFFD project they now have the extraordinary opportunity to sit at the table, share their unique viewpoints, and be heard by the FDA,” said Kathleen A. Arntsen, Lupus and Allied Diseases Association President and CEO. “We are thrilled to be part of this remarkable and long overdue initiative and we strongly urge anyone living with this debilitating disease to act now by taking the survey to help advance new therapies in lupus.”
“The Lupus Patient Focused Drug Development Meeting is an incredible opportunity for people with lupus to change the way new treatments are discovered, tested and approved and to bring those treatments to patients as fast as possible,” said Sandra C. Raymond, Lupus Foundation of America President and CEO. “The lupus community has united to support this critical effort and we encourage all people with lupus to participate and share their story so that we can continue to make a difference in the fight against this cruel disease.”
“The PFDD program demonstrates that the FDA is actively listening to patient concerns and priorities in considering how best to evaluate potential new drugs and diagnostic tools,” said Margaret G. Dowd, Lupus Research Alliance Co-CEO and Co-President. Kenneth M. Farber, Co-CEO and Co-President of the Lupus Research Alliance added, “We are proud to collaborate with the lupus community nationwide to support the FDA’s commitment and urge everyone to answer the call for feedback with the patient survey as a first important step.”
Your input as a person with lupus is extremely valuable and important to the success of this project. Do not miss out on this amazing and unique opportunity to be a powerful lupus activist and to help drive lupus drug development forward with your voice. We encourage every person with lupus to take action now by completing the survey even if you are unable to participate in the meeting. We greatly appreciate your time and efforts.
To learn more about the project and take the survey, please visit our website: www.lupuspfdd.org]]>
Attending the Lupus Foundation of America’s National Policy Summit for the first time in 2011 opened the door to an entire network of lupus advocates and a nationwide support system. I was diagnosed with lupus in 2007 and the Summit was the first time that I had been surrounded by hundreds of others who were experiencing the things that I was going through and truly understood the impact this disease has on your physical, emotional and mental well-being.
I have attended three Summits since 2011, which has enabled me to create a strong support network of lupus advocates nationwide. I don’t know many people in my everyday life that have lupus so being able to build relationships with others who have lupus has been critically important. It makes a real difference to have people that I can reach out to and lean on for support.
The Summit is where we can fight for the resources needed to put an end to this disease.
Not only does the Summit provide a great opportunity to meet others going through the experiences that you are, it also gives you the chance to speak with your elected officials about the brutal impact of lupus and the need for increased funding for research and education.
Those of us with lupus know how important it is to be our own advocates on a daily basis and we need to bring that same passion and drive to the Summit where we can fight for the resources needed to put an end to this disease.
I hope you will join me in Washington, D.C. on June 26-27 to meet with your representatives to share your story and explain the severity and impact of this disease.
We can’t stand by and wait for others to fight for us. We need to be the champions of this effort and lead the fight to ensure funding for lupus research and educational and awareness campaigns.
Have you registered to attend this year’s National Policy Summit? The Lupus Foundation of America has put together an exciting program and schedule of activities for the Summit, which has a direct and significant impact on people living with lupus and their families. This empowering two-day event provides direct access to the very leaders who are funding and implementing programs to advance lupus research, education and awareness. Take advantage of this opportunity to share your story and educate Members of Congress about lupus, urge them to join our cause, and do more in the fight to end this cruel disease.]]>
Eating healthy is vital to my (and everyone's) wellbeing. The better I eat, the better my body feels. As an acting major, I particularly watch what I eat because it not only affects how I look but how I feel during all of my active classes in the daytime and my tiring rehearsals at night. On top of this, I have realized what I eat affects my fatigue and can often counteract or reinforce the effects of my lupus upon my energy level. On a practical level, I find it difficult in college to find time to consistently cook healthy meals. Add that to my mediocre/non-existent cooking skills and you can often find me struggling to eat right. I also have celiac disease and am lactose-intolerant so finding food that I can actually eat sometimes limits my choices to things that may not be very healthy. To combat these problems, I have established a meal routine in college. I have a set breakfast I eat every morning that is quick and easy. And since I have it every day, I know exactly how long it will take for me to prepare and scarf down. I have a salad for lunch every day from a restaurant on campus. This is a great meal to grab in between classes - it's light enough so I don't feel sleepy or sluggish in my afternoon classes and it's quick and cheap since it comes from a salad bar. My dinner changes every night. Sometimes I cook it at home and sometimes I grab it with friends. This system may not work for everyone. But, it helps me to eat always at least 2 healthy meals a day. And, it leaves me time to splurge with friends. — Becca M.
I'm a stay-at-home mom of a four and a two year old. I'd be lucky if I have enough time in the day to take a shower much-less make myself a healthy compliant meal. It's so easy and convenient to grab something processed and pop it in the microwave. I'm slowly getting on track to healthier eating. The freezer is my new best friend. I make bigger batches, and I find that most foods freeze well. I also wash and chop all my veggies and store them in containers in the fridge, so I quickly grab whatever I need to throw together a nutritious meal without needing an additional 15-30 mins of prep time. Baby steps. — Wendy M.
My biggest challenge with healthy eating has been resisting temptations from those around me. Between going out with friends on the weekend, or catered lunches at work, it is difficult to stick to your diet when these foods are right in front of you. A strategy I use is making my own dinner, and then making enough for lunch at work the next day so I know I have a healthy choice. If I do this, then I will be full from my healthy meal and won't be inclined to make an unhealthy choice. I also educated my family on benefits of various foods and Paleo eating, so we are all on the same page under one roof! — Brittany W.
With every passing day I realize more and more the role that proper nutrition plays on my overall wellbeing and success in maintaining control over this disease. I carefully select and think about every piece of food or beverage that I put into my mouth and how it's going to make me feel. Eating is a routine part of life and we often don't give this simple necessity the focus and attention that it deserves. As someone who was plagued with an eating disorder for over a decade, the choice to eat right and properly nourish my body was initially an arduous task. Sometimes I wonder if my poor eating habits contributed to my getting lupus. All the while, despite having control over my eating prior to my diagnosis, I pay even more attention now to what I eat because I know it can be the difference between having a good day versus a bad one. We all know that we should eat right, but as the saying goes, “it's easier said than done.” Moreover, I plan on continuing to focus a significant amount of attention on my eating habits; it truly makes a huge difference. — Victoria G.
My biggest challenge is time and energy for grocery shopping and cooking. Recently, I started a very restricted diet, which had made it easier to decide what to eat. Since my diet is limited, it has made choosing my weekly menu a little easier. I also portion my leftovers for lunch at work. It seems to be helping! If only grocery shopping were easier on me! — Chelsey M.
The biggest challenge I face is finding fresh fruits and vegetables in my neighborhood. Also, take-out food in my neighborhood is unhealthy. I find that always cooking meals at home helps. Also, I shop for fresh ingredients near my job where the quality and selection is better. Most importantly, I drink water all day and stay away from sugary beverages. That and the help of my doctor helping me with a good medication regiment have helped maintain my lupus. — @harpiesfury
I eventually had to change to a gluten free whole food plant based diet. It definitely helps me manage my inflammation in my body. It is sometimes a challenge, especially during social gatherings. But it gave me an opportunity to become creative with food! It kind of started a new passion in me to cook the foods I love with only the ingredients my body can handle! I surely love eating! — @nakkiescharne
There is no special diet for people with lupus. However, it is important to eat plenty of fresh fruits and vegetables, whole grains, and moderate amounts of meats, poultry and fish so you can feel your best.
A few additional tips:
Check out the recipes on our National Resource Center on Lupus to learn how you can prepare easy, delicious meals perfect for anyone with (or without) lupus.]]>
In the midst of keeping up with day-to-day obligations, you may not be thinking about teaching life lessons to your children. But you are. Every day, they are learning about courage, perseverance, and patience—from your example.
This Mother’s Day, we asked three moms with lupus—Jana Eshaghian, of Los Angeles, CA; Sara Gorman, of Alexandria, VA; and Erin Maciag, of Milford, CT—to talk about what they think their children are learning.
Gorman, author of Despite Lupus: How to Live Well with a Chronic Illness, believes that children are able to learn compassion at a very young age, because she sees it in her own daughters—Bernadette, 6 and Deirdre, 8. “I remember we were walking to school on one of the terrible cold days last winter, and Deirdre had forgotten her gloves. So I said, ‘Hey, do you want my gloves?’ ‘Oh, Mom,’ she said, ‘you need those, your hands and fingers will turn purple!’—because I have Raynaud’s as well as lupus. I said, ‘You know what, I’m going right back to the car, so why don’t you take them for school.’ ‘Are you sure you’ll be all right?’ she asked. And I said, ‘Absolutely.’ So she took my gloves, and when she came home from school, she didn’t forget: she handed them back to me, and said, ‘I know you need these.’”
When disappointments threaten, Maciag, 31, mother of six-year-old Abigail and four-year-old James, says that her children have learned to accept new ways to create experiences. “In 2015 my husband’s family was getting together the weekend of Easter,” she remembers. ”I was feeling exhausted and had a slight fever due to lupus. I knew if I went it would completely derail my week, because I’ve had experience now in that. And so as hard as it is to make those decisions where you can’t attend a special event like that, I’ve had to not only educate my family but also give myself a better mindset about it—that it’s just a date on the calendar and we can always get together at a different date or make Easter on any day of the month. We explained to the kids, ‘Mommy can’t go with you to Nana’s, but when you come home on Sunday we’re going to do an egg hunt with Mommy at the house.’ And they understood.”
And Eshaghian’s daughters Sarah, 23, and Hannah, 21, whose mom was diagnosed with lupus when the girls were 10 and 8, offered these thoughts:
“Having a mom with lupus taught us to become more independent—how to make a school lunch, how to do laundry without turning everything pink, how to make pancakes on a Saturday morning, how to take out the trash. Helping out at home made us feel confident and more ‘adult.’ We were also the most prepared college freshmen of anyone else we knew!"
“We don’t really remember being disappointed by Mom not being able to go places or do certain things. We understood she could do some things and not others."
"Still, we were hyper-aware of Mom’s illness when outside our home—part of it was an instinct to protect her and part of it was being an adolescent and naturally being embarrassed by your parents! But we were never embarrassed by the fact that she needed to use a scooter, a wheelchair, or a cane. In fact, we would have liked it if Mom had asked for more help instead of overexerting herself and paying the consequences later. A child can sense when a parent is having a difficult time, and it was hard to watch her struggle. Watching her, we also learned that in the face of adversity, whatever the situation, you just do the best you can."
“Most of all, growing up with a mom with lupus helped us realize that everyone has their own trials and tribulations, and you can’t tell by looking at someone what they’re going through. It heightened our sensitivities to other people’s needs and increased our caregiving abilities. Today we’re grateful to be who we are, and we know that our characters were formed, largely, by how we were raised."
This Mother’s Day, make a gift to honor a loved one with lupus and improve the quality of life for all people impacted by this devastating disease.
This diverse and highly respected group of panelists also includes people living with lupus who will bring their perspectives to each of the panel discussions. The speakers, announced today, will lead three interactive and educational panel discussions.
More than 200 lupus advocates are expected for the two-day Summit. They'll have the opportunity to directly engage with these lupus thought leaders, and learn about the latest developments in lupus research and education.
Registration for the summit is currently open, however, tickets are limited and the event is expected to reach maximum capacity soon.
The first panel, Accelerating Lupus Research, will be moderated by our own Susan Manzi, M.D., Medical Director for the LFA. The panel will cover the barriers facing lupus research and drug development and what the lupus community is doing to overcome those barriers. This session will also highlight how people with lupus and their families can contribute to overcoming the challenges in advancing lupus research.
Jill P. Buyon, M.D. and Director, Division of Rheumatology, Department of Medicine at New York University will moderate the second panel, The Role of Federal Agencies in Lupus Research, Education and Awareness. This session will update the lupus community on the latest initiatives underway through key government programs, and clearly demonstrate how our advocacy efforts make a difference. This panel will underscore the importance of the Congressional meetings that will take place on day two of the Summit.
Below, you will find the complete list of participants serving on these two panels.
Accelerating Lupus Research
The Role of Federal Agencies in Lupus Research, Education & Awareness
Stay tuned for details of the third panel, The Promising Pipeline in Lupus Drug Development, which will include representatives from the pharmaceutical industry engaged in lupus drug development.
The exciting speakers we are securing will update Summit attendees about their efforts to bring new treatments to people living with lupus.
To register or learn more about the National Policy Summit program and other activities scheduled during the two-day event, visit lupus.org/summit.
Almost half (43%) of people living with lupus responding to a recent poll indicated that they worry the most about physical inactivity and social isolation due to the debilitating effects the autoimmune disease has on the body. Nearly half (47%) of the participants also felt that the impact lupus has on daily living is most misunderstood by their physician, while almost one-third (30%) believed that the emotional impact is most misunderstood.
Almost half (47%) of those who responded to the World Lupus Federation (WLF) poll indicated they want better management and treatment options available to them through their physician. Only one treatment developed specifically for lupus has received regulatory approval since the 1950’s.
These opinions are included in the “Lupus Knows No Boundaries e-Report,” devel-oped through a collaboration between the WLF and GlaxoSmithKline (GSK) for World Lupus Day (May 10). The report brings together firsthand experiences of people with lupus, their advocates and those who treat them, to tell the real story of lupus, highlighting the ongoing physical and emotional needs of those who are affected by this incurable disease. The full report is available online at worldlupusday.org.
“I first came to know lupus through my childhood friend, Lucy Vodden, about whom the song Lucy in the Sky with Diamonds was written,” said Julian Lennon, photographer, author, musician, philanthropist and global ambassador for the Lupus Foundation of America. “It was Lucy’s struggles that opened my eyes to how devastating the burden of lupus is on millions of individuals and their families.”
Shannon Boxx was a member of the United States women’s national soccer team, win-ning three Olympic gold medals before her retirement in 2015. But for most of her ca-reer, she was secretly carrying the burden of a lupus diagnosis. “I decided to speak publicly about lupus because I was tired of hiding it. I was at a point in my career where I knew I probably wasn’t going to play much longer and I felt I had a real responsibility, being in the public eye, to talk about lupus and bring more awareness,” said Boxx.
Public awareness of lupus remains stubbornly low, contributing to public misunderstanding and misconceptions about the disease. A 2016 global opinion survey* found that over half of the respondents (51%) were unable to identify the physical complications associated with lupus and more than a third (35%) did not even know that lupus was a disease.
The World Lupus Federation, a global coalition of lupus patient groups, is working to raise the public profile of the disease. “We’re calling for everyone to unite and take ac-tion on behalf of those affected by lupus,” said Sandra C. Raymond, President & CEO of the Lupus Foundation America which serves as the Federation’s Secretariat. “By shining a light on lupus we can ensure that friends and family, healthcare professionals, employers, government officials, health insurers and pharmaceutical companies are aware and informed of the many and varied challenges that people with lupus face.”
“The e-Report and Twitter Poll findings show that there is more that can be done to raise awareness, understanding and prioritization of this debilitating disease and to give patients the confidence to speak up about the impact of their symptoms,” said Dr. Alex Liakos, Global Medical Affairs, GSK. “At GSK, we are delighted to have been able to collaborate with the World Lupus Federation and look forward to continuing to support the needs of those living with lupus in future campaigns.”
“It’s our responsibility to get involved and do whatever we can to help fight this unpre-dictable and misunderstood disease,” said Julian Lennon. “It is my goal to keep fighting and bringing attention to lupus so we can raise the money needed to develop better treatments, provide support to people affected and fund the research that someday will bring an end to lupus and its brutal impact on people’s lives.”
Learn more about lupus by downloading the “Lupus Knows No Boundaries e-Report” at worldlupusday.org and sign the petition to urge the World Health Organiza-tion to make lupus a global health priority.
* About the Poll and Survey Data
The Twitter poll was conducted by 12 patient groups in nine countries, with a total of 2,048 votes cast. Although a social media poll provides valuable insights, it is not statis-tically significant or demographically representative. The 2016 online, six-question public opinion survey was conducted by Yolo Communications for GSK and involved 16,911 adults from 16 nations.
About the e-Report
The “Lupus Knows No Boundaries e-Report” has been co-created by the World Lu-pus Federation and GSK as part of a range of collaborative activities being coordinated around this year’s World Lupus Day, with the aim of raising awareness of the global impact of lupus, addressing public misconceptions about the disease and empowering the lupus community to take action to help address the needs of those living with lupus.
This critical funding for lupus was made possible thanks to our grassroots advocates, the Congressional Lupus Caucus Co-Chairs (Rep. Thomas J. Rooney [R-FL], Rep. William Keating [D-MA], Rep. Ileana Ros-Lehtinen [R-FL], Rep. Eddie Bernice Johnson [D-TX]), and the leaders of the House and Senate Appropriations Committees.
“This significant increase in federal funding for lupus-specific medical research is a great victory for the lupus community.”
—Sandra C. Raymond, President and CEO of the Lupus Foundation of America
“We are grateful to the Congressional Lupus Caucus Co-Chairs for championing funding for lupus research, and we thank Chairman Rodney Frelinghuysen for his leadership on the House Appropriation Committee for establishing the new lupus research program at the Department of Defense.”
For more details on how this spending bill impacts lupus research and education, please read our earlier post: Congress Set to Approve $13 Million for Lupus.
The Lupus Foundation of America’s ongoing advocacy work and the efforts of its national network of lupus activists have been critical in the fight against lupus.
Plans to keep the momentum going are in place with the National Lupus Policy Summit set for June 26-27 in Washington, D.C. As part of the Summit, those impacted by lupus will help educate members of Congress about the true nature of the disease and why more must be done to advance lupus research and education on Capitol Hill.
Visit www.lupus.org/summit to learn more and register today.