Yen and Singh found that overall, lupus was among the top 20 leading causes of death in females ages 5-64. Among black and Hispanic women lupus ranked 5th in the 15-24 years, 6th in the 25-34 years, and 8th-9th in the 35-44 years age groups, after excluding the three common external injury causes of death from analysis. These findings continue to underscore the burden of disease minority women with lupus experience and also demonstrate that lupus is a concerning public health issue for women overall.
Lupus is a chronic autoimmune disease that can impact any part of the body. It affects millions of people worldwide and is challenging to live with and extremely difficult to treat. Despite the widespread prevalence of lupus and seriousness of the disease, lupus is rarely recognized as one of the leading-causes-of-death in young women. Instead, many lupus deaths are attributed to consequences such as kidney failure and heart attacks.
This eye opening study promotes disease awareness and highlights the seriousness of this potentially life-threatening disease. Currently, lupus is not in the CDC’s annual selected list of causes of death for women. Recognizing this burden may influence government policy, research funding, and persuade doctors to list the disease as the cause of death.
Learn more about this study by reading the available abstract.
The Relative Burden of Lupus Mortality Lupus- An Unrecognized Leading Cause of Death in Young Women: Population-based Study Using Nationwide Death Certificates, 2000-2015.
Eric Y. Yen, MD, MS1, Ram R. Singh, MD1,2,3,4
Arthritis & Rheumatology
On behalf of the board of directors, staff and supporters of the Lupus Foundation of America, we wish to express our sincere condolences to the family of Barbara Bush for their loss. We extend our hearts and prayers to the family during this difficult period.
Mrs. Bush has inspired people with lupus around the world through her strength and courage as she and her family faced many of the same challenges from living with an autoimmune disease. She and her family have supported efforts to increase awareness of lupus, expand research on the causes and cures for lupus, and services that provide care and comfort to people living with lupus.
The former First Lady wrote the “Foreword” to the very popular book, Lupus Q&A, Everything You Need to Know. In it she wrote, “One of the great mysteries of our time, [autoimmune disease] inflicts psychological and physical damage upon its sufferers. Systemic lupus erythematosus [lupus], in particular, has caused untold devastation and suffering.” She added, “I know, for this disease has touched, and will doubtless continue to touch, the members of my family.”
We join with her friends and admirers from around the world in paying tribute to her life that was full of kindness, compassion and determination for all people who are facing health challenges.
There has been growing interest among people with lupus in the possible benefits from the medical use of cannabis (marijuana) to relieve chronic joint pain. The Lupus Foundation of America’s policy on medical marijuana calls for further scientific research on the medical use of marijuana for treating and alleviating the symptoms of lupus. More research in this area will provide evidence regarding its safety and effectiveness.
Now, researchers at the Feinstein Institute for Medical Research on Long Island, New York have announced they are leading a nationwide clinical trial that will test the efficacy of a synthetic cannabinoid mimetic (imitating) drug, without mood- or behavior-altering properties, for the treatment of joint inflammation in lupus.
This new investigational drug candidate, JBT-101 (lenabasum), is similar in structure to tetrahydrocannabinol (THC), the active chemical in cannabis, however lenabasum lacks specific side groups that changes drug binding to certain receptors that alter brain function. Therefore, instead of affecting the brain, this oral therapy is designed to increase production of anti-inflammatory molecules in the body while reducing production of molecules that increase inflammation.
Dr. Meggan Mackay, professor of medicine at the Feinstein Institute, is the lead investigator for the clinical trial which will determine the efficacy of lenabasum to treat joint inflammation among 100 people with lupus. An additional 14 clinical trial sites across the United States also are participating in the two-year study sponsored by the National Institutes of Health (NIH) National Institute of Allergy and Infectious Diseases (NIAID) and supported by Corbus Pharmaceuticals.
Investigators will evaluate whether lenabasum may be able to serve as an alternative to immunosuppressant therapies, which often have many potentially debilitating side effects. Several smaller studies in other inflammatory disorders have reported positive results with lenabasum.
Adults with lupus that have active joint disease and at least moderate pain, and who may be interested in finding out more about this clinical trial, can contact Andrew Shaw at 516-562-2591 or Latchmin Persaud at 516-562-3814.
The Lupus Foundation of America congratulates Dr. Mackay and her team on their efforts to evaluate lenabaum as a potential treatment for lupus, and the National Institute of Allergy and Infectious Diseases (NIH-NIAID) and Corbus Pharmaceuticals for supporting this study.]]>
With the stock market near an all-time high, now is a great time to make a gift of appreciated stocks to the Lupus Foundation of America. You will not only help support people living with lupus, but you can avoid capital gains taxes, brokerage fees, or sales commissions.
To make a gift of securities, notify your broker in writing and provide them with the following information:
DTC #: 0793
Lupus Account #: 4038-7296
Stifel Nicolaus & Co.
Account Executive: Karin Mottus
Sr. Branch Operations Manager: Vicky Wilhelm
One South Street, 30th Floor
Baltimore, MD 21202
You can also call the Lupus Foundation of America at 202-349-1153 for instructions on how to complete the transfer.
A donor-advised fund is an easy way to make charitable donations and receive immediate tax benefits. Here’s how:
If you are 70½ or older, you can give a give a gift to the Lupus Foundation of America as a way to fulfill your required minimum distribution (RMD). The benefit to you is that even if you do not itemize your taxes, the gift distribution will not be considered taxable income.
Any 401(k), 403(b), Keogh or profit-sharing pension is eligible. When completing or amending your enrollment, simply name Lupus Foundation of America as the beneficiary. Keep in mind that when distributed to a non-profit, these assets are tax-free, but when given to a loved one, they are taxable.
Please consult with your tax or financial advisors to determine the best charitable giving strategies for you.
We are so grateful for your generosity. Please contact Shane Yost at email@example.com or (202) 349-1153 to discuss how your gift can help further our mission.]]>
This month, we asked Sharing the Journey participants the following question:
I love to clean and I'm stubborn, so making a plan for tackling my spring cleaning is the only way to avoid over-doing it. I generally handle one room at a time. While I'm cleaning I always find something that needs to be done that wasn't on my original list. I have to force myself to add it to the end of the list or add it to another day because I tend to want to get everything done all at once. I don't have allergies so wearing a mask isn't necessary for me; however, the ups and downs of spring cleaning weighs heavy on my knees, ankles, and lower back. As a result, I try to sit to clean when possible, instead of squatting. Also, at the end of a cleaning day I reward myself by soaking in a hot bath. I also find that raising windows, or opening blinds to let the sunlight in makes for a happier cleaning process (but of course I wear my sunscreen!) – Kayla B.
For college students, the weeks between spring break and the end of school are incredibly busy. At this point, I'm two weeks behind in homework and four weeks behind in sleep. Amidst all the academic responsibilities, finding time to clean, organize, and declutter is incredibly difficult but definitely necessary. However, when I let responsibilities apart from schoolwork build up during the week and try to deal with them on a daily basis, they distract me from my academics and prevent me from making significant headway on my school assignments. So, I try to set aside one day a week (Tuesday) for all my non-school related responsibilities, such as grocery shopping, laundering, vacuuming, mending, organizing, and disinfecting. During the week, I write down what I call "non-school to dos" in a list on my phone whenever I think of them. This way, I never forget them and I don't have to worry about them until Tuesday. The rest of the week, I can devote my time to my schoolwork and to attending all my rehearsals, meetings, classes, and work shifts. If anything urgent arises that cannot wait until Tuesday, I try to deal with it as soon as I get home, before I settle in to work on homework or take a nap. – Becca M.
It helps for me to break up tasks. I never do an intense cleaning anymore and I always break things up with stretching. When I vacuum or sweep, I always alternate from left to right arms as well. I also like to play music to make it more enjoyable. I take walks to ensure I get my blood flowing. This and stretching are both helpful for me. Also varying the task and having something to focus on. – Betsy H.
If you have lupus, I think it’s important to be organized all the time, not just for spring. I try and de-clutter several times a year, that way it never gets too bad. My husband is also a huge help with cleaning, so having friends and family are a must! We also like to have someone come in and do deep cleaning about every three to four months, this makes it easier to keep up. I think whatever works to help keep the stress down is great. – Roxi W.
Whether you are cleaning this Spring or maintaining your cleaning year-round, it’s important to have a plan, ensure cleaning isn’t stressful and take into account health considerations. If you need suggestions or recommendations for keeping your cleaning healthy, please contact one of our health educators.
If you have household items you are looking to donate, be sure to check out the Lupus America Household Goods Donation Program. Proceeds from the sale of donated items are used to support lupus research, programs and support.]]>
When To'Ccorra was diagnosed with lupus in 2015, she didn’t tell anyone outside of close family and friends because she didn’t want people to feel sorry for her.
Doctors originally told her that she had discoid lupus as she had developed round dark spots all over her body. However, not long after her diagnosis, she began having breathing problems and doctors found blood clots in her lungs, then her joints and muscles began to ache, and she had to be hospitalized.
Her rheumatologist then added systemic lupus to her diagnosis and she was put on blood thinners. The problems continued to proliferate as doctors informed her that she had early onset for heart failure.
Now 31 years old, To’Ccorra takes sleeping pills, muscle relaxers, blood thinners, anti-depressants and several other medications. She says that fatigue is her biggest struggle right now but her strong spiritual faith keeps her going.
Depression also has been a struggle in the past, but To’Ccorra says that lupus has actually helped her manage depression.
“I have to stay upbeat and positive since my mood has an impact on this illness, and my main motivation is to stay out of the ER,” says To’Ccorra. She has learned to ‘snitch on herself’ and no longer suffers in silence since she feels that having a support system is critical for minimizing depression. She also started journaling last summer to help keep her spirits high.
But nothing brings her more joy than giving back by organizing fundraisers for lupus research.
“I am making a difference by using my skills to do something that means a lot to me,” says To’Ccorra. “With the help of family and friends, I know that my purpose in life is to bring us together to do something good and give back to this wonderful community in any way we can.”
To’Ccorra is a professional party planner and as such, she has organized several events to raise funds for lupus. Over the past couple years, she has raised nearly $2,500 through various events – including hosting a dance class, game night and brunch. In addition, she has received numerous donations from local community businesses who support her events and donate a portion of their sales to lupus research.
To’Ccorra has big plans for future fundraising initiatives, but she also wants to encourage other people who want to support the lupus community to host their own events and activities through Make Your Mark™ during Lupus Awareness Month. She offers the following suggestions to get started:
To’Ccorra also believes that it is important to build on progress, once the relationships and plans are in place then it is easier to organize additional events and set higher fundraising goals.
Learn more about Make Your Mark™ fundraising program.]]>
Increase funding for the National Lupus Patient Registry at the Centers for Disease Control and Prevention to help identify what causes lupus and how to speed time to diagnosis.
Advocates also saw the impact of their outreach to their legislators over the past year as President Trump just today signed into law the FY 2018 Omnibus Appropriations Bill, which includes increased funding for critical lupus research and education programs through September 30.
“Under the leadership of the Congressional Lupus Caucus, members of Congress have long recognized the importance of supporting the lupus community, and have over time stimulated millions of dollars to increase lupus research funding to help improve the lives of all people affected by this cruel disease,” said Sandra C. Raymond, CEO of the Lupus Foundation of America. “This year our advocates, including many youth advocates, showed their strength, power and dedication to changing the future by leading the charge to discuss with their elected officials their daily struggles with the disease and show the urgent need to increase funding for research, access to quality and affordable care, and awareness of lupus.”
In addition to advocating on Capitol Hill, the National Lupus Advocacy Summit provided those living with lupus and their families with empowering activities including interactive workshops and educational programming with a special focus on childhood lupus. The Summit’s first panel session discussed the latest news and challenges in childhood lupus research and drug development, and provided hope that there is encouraging work underway and progress being made. For years, the Lupus Foundation of America has made childhood lupus research a priority, funding research and supporting efforts to better understand the disease in children and teens and to help advance the development of new treatments.
To advance awareness of lupus across Congress, the Lupus Foundation of America also hosted an educational Congressional Briefing. Speakers during the briefing included Susan Manzi, M.D., M.P.H., Chair of the Medicine Institute at Allegheny Health Network and Medical Director of the Lupus Foundation of America; Karen Costenbader, M.D., M.P.H., Director of the Lupus Program at Brigham and Women’s Hospital and Professor of Medicine at Harvard Medical School and Chair of the Lupus Foundation of America’s Medical-Scientific Advisory Council; two co-chairs from the Congressional Lupus Caucus, Representative Ileana Ros-Lehtinen (R-FL) and Representative Bill Keating (D-MA); Xcenda’s Jennifer Snow, and lupus advocate Amarissa Mauricio.
“Thanks to our year-round lupus advocates and support from Congress, we have taken several steps forward in the fight against lupus, however more work remains ahead of us,” said Dr. Manzi. “To this day, there has only been one drug developed specifically for lupus and most treatments used for lupus are borrowed from other diseases and can have damaging side effects. It’s inspiring to see so many lupus advocates make their voices heard this week as they met with their representatives, shared their stories and discussed the hope they have for a world free of lupus.”
This year, the Lupus Foundation of America also honored those whose advocacy has made a difference in the fight against lupus at the Lupus Heroes Reception. The honorees included lupus advocates Monique Gore-Massy (New York) and Tiffany Alsbury (Mississippi), as well as representatives from the Childhood Arthritis and Rheumatology Research Alliance (CARRA).
The 2018 National Lupus Advocacy Summit was made possible by the support of the Lupus Foundation of America’s donors, board members and grant support from the following organizations:
Lupus is a misunderstood autoimmune disease that can ravage different parts of the body in an unpredictable manner. It is difficult to diagnose, hard to live with and challenging to treat. There is only one treatment approved by the FDA created specifically for lupus – Belimumab. No treatment works for all patients during a lifelong chronic illness, and the white paper establishes that the current standard of disease control is unacceptable, identifying specific problems with the design of lupus clinical trials that are getting in the way of developing effective treatments.
The recommendations in the white paper highlight five key solutions for optimizing lupus clinical trials, which include making trials available to people with all types of lupus, decreasing the size of trials, using recent scientific breakthroughs to select patients most likely to benefit from a given treatment, improving choices in the background medications used, and improving the methods by which the symptoms of people with lupus are tracked and graded.
“I’ve been involved with more than thirty failed clinical trials for lupus since the 1990’s,” said Joan T. Merrill, M.D., Chief Advisor of Clinical Development at the Lupus Foundation of America and member of the Oklahoma Medical Research Foundation, and the lead author of the paper. “The heroes of our field are those who patiently re-evaluated the data from each disappointing study. Now, finally we can apply those lessons learned to give promising new treatments for lupus a fair test.”
The white paper builds upon the Lupus Foundation of America’s 2009 Lewin Report, which issued recommendations on ways to overcome the barriers that have obstructed lupus drug development. The white paper is also an outgrowth of the Foundation’s ongoing leadership in working with the FDA to advance clinical trials in lupus.
Dr. Merrill along with Susan Manzi, M.D., M.P.H., Chair of the Medicine Institute at Allegheny Health Network and Medical Director of the Lupus Foundation of America, and Victoria P. Werth, M.D., Professor of Dermatology & Medicine at the University of Pennsylvania, School of Medicine drafted the paper. As part of the research for composing the paper, they received input and guidance from nearly three dozen opinion leaders in the field of lupus including lengthy consultations with key clinical scientists from a number of biopharmaceutical companies. This represents the first time the lupus research community has come together to submit recommendations to the FDA for improving clinical trials.
“The breadth of input in this white paper clearly demonstrates that a community of leaders in the field has agreed upon a plan for improving lupus clinical trial design,” said Sandra C. Raymond, CEO of the Lupus Foundation of America. “This is a first of its kind collaboration among lupus experts that may shift the paradigm for how lupus clinical trials are conducted so that more effective treatments for this devastating disease can be developed.”
To view the “Lupus Community Panel Proposals for Optimizing Clinical Trials: 2018” white paper, visit: lupus.bmj.com/content/lupusscimed/5/1/e000258.full.pdf.]]>
Today, President Trump signed into law the Omnibus Appropriations bill, which was approved by the House of Representatives and the Senate on March 22.
The critical funding for lupus research and education programs included in the bill was made possible thanks to our advocates across the country, the Congressional Lupus Caucus co-chairs and the leaders of the House and Senate Appropriations Committees.
Help us continue the momentum
The Lupus Foundation of America’s ongoing advocacy work and the efforts of our national network of lupus activists have been critical in the fight against lupus and in victories such as the one today. Join us in the fight by becoming a lupus advocate and help us keep this momentum going.
Statement from Sandra C. Raymond, Chief Executive Officer of the Lupus Foundation of America in response to passage of the US House Appropriations Bill.
The Omnibus Appropriations bill passed by the US House of Representatives on March 22 includes increased funding for critical lupus research and education programs, including $6.5 million for the National Lupus Patient Registry at the Centers for Disease Control and Prevention (CDC) and over $37 billion for the National Institutes of Health, the single largest source of lupus research funding.
We are thrilled that Congress has responded favorably to lupus advocates by providing a $500,000 increase for the CDC’s Lupus Registry, a $3 billion increase for NIH and $5 million to continue funding for the Lupus Research Program at the Department of Defense. This funding is a huge boost to our efforts to better understand the true impact of lupus, identify who it strikes and why, speed time to diagnosis and find new treatments for the 1.5 million Americans living with lupus.
We applaud the leaders of the Congressional Lupus Caucus – Representatives Tom Rooney (R-FL), Bill Keating (D-MA), Ileana Ros-Lehtinen (R-FL), and Eddie Bernice Johnson (D-TX) – and the members of Congress who made this funding increase possible.
Thank you to our national network of lupus advocates and the thousands of people who joined together on Wednesday to send a strong message to Capitol Hill during the Foundation’s National Advocacy Summit. The increases for FY 2018 demonstrate that your efforts makes a difference. We will continue to work with Congress and the lupus community to build upon this victory.
The Omnibus Appropriations bill next will be considered by the U.S. Senate. Once final legislation has been approved by both chambers, it must then be signed into law by the president. We will update constituents on the progress of this legislation as well as our ongoing efforts to further expand programs that support our mission – to improve the quality of life for all people affected by lupus.
Inset photo: (from left to right) Lupus Foundation of America's medical director Dr. Susan Manzi joined by two Congressional Lupus Caucus Co-Chairs, Rep. Ileana Ros-Lehtinen (R-FL) and Rep. Bill Keating (D-MA) at the Foundation’s Lupus Briefing for members of Congress on Wednesday, March 21.]]>
Tracoyia Roach is a recipient of the 2017 Lupus Foundation of America Gina M. Finzi Student Summer Fellowship. After losing her mother to lupus complications, she decided to pursue a career in lupus research to better understand the genetics behind the disease.
Currently in her first year of her doctoral studies, Tracoyia is a diligent student and is dedicated to becoming an independent lupus investigator with the help of her mentor, Dr. Laurence Morel, a Professor of Pathology at the University of Florida. Their research is focused on identifying genetic pathways that are responsible for the onset of lupus.
“The Gina M. Finzi Memorial Student Summer Fellowship has helped me begin my career in lupus research and provided me with quality training as a young scientist” – Tracoyia Roach
After graduating, Tracoyia is committed to staying in the field to help advance lupus research and is applying for additional funding to support her ongoing projects. She is well on her way to becoming a scientist who is trained to make important contributions to society’s understanding of lupus and biomedical research.
Gina M. Finzi Memorial Student Summer Fellowship Program
The fellowship program aims to foster the interest among students in the areas of basic, clinical, translational, epidemiological or behavioral research relevant to lupus. Six awards will be given; one award will be in support of an underrepresented minority student, a second award will be in support of a student whose work directly impacts rural areas.
Career Development Award
The award is designed for second or third year rheumatology, nephrology and dermatology fellows in the U.S. and Canada who are interested in lupus research. In support of the Foundation’s commitment to advance pediatric research one of the two awards will be granted to a qualified applicant with a study focused on pediatric lupus research.
Novel Pilot Therapeutic Approaches in Childhood Lupus Award
On behalf of the Michael Jon Barlin Pediatric Research Program, the Novel Pilot Therapeutic Approaches in Childhood Lupus Award will provide one two-year grant award in the amount of $500,000 for a study that addresses the key issues relevant to treatment options for childhood lupus research. Applications for this award only are due on March 16th at 5pm. Please email all application materials to firstname.lastname@example.org.
Lupus investigators who are interested in the grant opportunities may obtain more information and links to the online applications on our site. Applications are due by April 9th, 2018 at 5PM EST.]]>
She also serves as a bilingual ambassador in her community spreading awareness about lupus. “I want everyone to know absolutely everything there is to know about lupus,” she says.
That’s because she remembers how she felt when faced with her own lupus diagnosis in 2013 at age 26. “I was scared, confused, and very emotional.”
She learned about the Foundation’s Walk to End Lupus Now® event in 2015. “The Walk day experience is simply amazing,” she says. “It’s a great way to support the cause of education and medical research so that one day we have a cure.”
To raise money for the Walk, Grace and her Walk team members came up with the idea of an annual Zumbathon, open to anyone who makes a donation to the team. A fitness program set to Latin-American pop music, Zumba is a guaranteed fun way to get moving, no special training needed. Grace’s cousin donates his time as DJ and the mayor of nearby Union City arranges the locations, as well as free water for participants. Grace is determined to see attendance at their Zumbathon grow.
To get the word out about the Zumbathon and the Walk, Grace and her team members use social media, word of mouth and put up fliers at the library and laundromats, and other local places that allow it.
The owner of the Spanish language newspaper, “El Especialito” is another valuable connection. “I’ve known him since I was a baby,” Grace says. “He ran an ad promoting the Walk in the paper’s New York edition, and that was pretty cool.”
All of her efforts throughout the year come together on Walk day—and it’s all worth it.
“What motivates me to walk is every single person suffering and fighting lupus every day,” Grace says. “Just seeing so many people come together to support one another is uplifting—it gives me more hope that we will live lupus-free one day.”
Be Powerful and join us for a Spring Walk to End Lupus Now® event! Find a walk in your community and register to start your team today.]]>
This month, we asked Sharing the Journey participants the following question:
Some nights it’s very hard to sleep depending on my day. Usually I don’t get that much time to sleep because I am always working full-time, on top of being a full-time student. It’s hard to try to maintain a balanced schedule to finish homework. Because of this, I generally only get five to six hours of sleep each night. When I was first diagnosed with Lupus, I was always stressed out, depressed, angry at everyone and everything, but then I began to listen to classical music and it would always calm me down. Now, before I go to sleep, I listen to classical music or I do meditation. These techniques have helped me immensely. Even when I am not going to sleep I will listen to classical music throughout the day and it makes me relaxed. – Kyra S.
Lupus has definitely impacted my ability to sleep well. Sleeplessness was one of the many symptoms I experienced when I was first diagnosed. To help me sleep better at night, I always try to get in bed early and I do not use my electronic devices once I am in bed. – LaTrease B.
With my busy college schedule, it's pretty difficult to get enough sleep every single night to appease my lupus. Lupus typically makes me more exhausted, so falling asleep is normally quite easy for me. However, there are days that my stress level is incredibly high and my racing mind keeps me awake; there are other days that my lupus fatigue makes me feel so bad, I can't fall asleep. In both situations, I normally combat these obstacles with the same weapons. First, I establish a nightly bedtime routine that triggers my brain into sleep mode. By reading the same book, listening to the same music or even playing the same game every night, my brain learns to connect this activity with sleep. Eventually engaging in this wind-down routine makes me drowsy. Second, I keep a notepad beside my bed to write down everything that may pester me during the night. Every time I remember something I'm scared I will forget, I put it on that notepad to check the next morning. Finally, I focus on my breathing. Your breathing patterns have the ability to slow your heart rate and consequently physically and consciously relax you. I often breath in on a count of four, hold for a count of four, release for a count of for, and then rest for a count of four before starting the cycle again. Each round, I increase the count by one aiming to finish by 10. I'm normally asleep by six or seven repetitions. – Becca M.
Lupus can definitely affect your sleep. I found that during a flare, my sleep is greatly affected. Also, the pain always seems to be worse at night. When this does happen, I really try and control the pain before getting into bed. Hot baths or showers, essential oils, and anti-inflammatories seem to help. I also use sleepy time tea before bed or take melatonin. The key for me is to have some sort of pain relief before even crawling into bed, otherwise I know I’m fighting an uphill battle. Also, if the time allows, take naps! – Roxi W.
There are numerous things that I do to help with sleep. I have figured out that my circadian rhythm is an early to bed and early to rise pattern, and this was helped out by a rooster several years ago that started crowing at 4:30 am. At the time, I had been getting up to an alarm at 6am for work. I am several years older now and I am automatically tired around 8:30 to 9pm and up by 5am. This doesn't leave much time for a nightlife, but I am fine with that. I get in a good brisk walk every morning and do weights six days a week, alternating upper and lower body. I eat a Mediterranean diet, so my largest meal is midday and smallest is late afternoon so my body is not digesting a significant amount into the evening. I turn off all electronics at least an hour or two prior to bed and settle into reading. It's not uncommon that my husband and I will watch something that is humorous as laughter helps to relax me in the evening. I give enough time for hygiene and then do some meditation in bed as I drift off to sleep. Other things that I do in the morning as I arise is hydrate and stretch first thing. – Betsy H.
A regular sleep schedule doesn’t just give you energy for the day ahead – it can also help reduce inflammation in your body. But falling asleep isn’t always easy, especially when you’re dealing with pain, fatigue, or other symptoms of lupus.
When counting sheep isn’t enough, check out "Sleep well despite lupus" for tips on catching those all-important Z’s.]]>
Mallory believes that fundraising has given her the opportunity to do something positive to support the lupus community, although she had challenges raising funds initially.
“Going to my employer and asking for their support made all the difference,” said Mallory. “They have resources to get the word out quickly and ask for broad support. The response from people who want to do something for a good cause has been overwhelming.”
Now, Mallory is energized to meet her higher fundraising goal and believes that she will be successful with the support of her employer.
Diagnosed at age 14, Mallory has been living with lupus for nearly 20 years. It started as a butterfly rash across the bridge of her nose, which was the only visible sign of the disease. She also had achy joints, chronic fevers and was tired all the time.
After seeing six doctors and having numerous tests, doctors finally confirmed that it was lupus. Although she was initially diagnosed with systemic lupus, at the age of 29 doctors diagnosed her with lupus nephritis after undergoing a renal biopsy.
Now she has to maintain her well-being through diet and exercise, which has made a big difference in her life.
At the age of 33, she is now focused on starting a family with her husband, Rammell Nwaokai, and she believes that being healthy is a critical priority.
“I am healthier now compared to when I was younger, and as a result I experience fewer flares and they are more manageable,” says Mallory.
She has run several half and full marathons and participated in numerous triathlons, including Ironman 70.3 in Austin, Texas which has helped her maintain a healthy lifestyle and kept her motivated.
But what truly drives her fundraising aspirations is the opportunity to do something and give back to the lupus community. As Mallory says, “Most people don’t know what lupus is or how many people are affected and it’s important that we raise awareness and support people who have lupus and those who need help.”
Mallory has not allowed lupus to define her life or her decisions, although she recognizes that it has had a profound impact on her. She wants other people in the lupus community to know that they are not alone in their struggles, and she feels that raising funds has been a great way to bring the community together to support one another.
Learn more about the Make Your Mark fundraising program and to starting your own Lupus Awareness Month event.]]>
The Lupus Foundation of America, the only national force devoted to solving the mystery of lupus, today announced the election of two new members to its national board of directors, Andrew Brophy, President of Brophy Properties Inc., and Barbara Polk, President of Amplify People Advisors. Brophy and Polk, along with the other members of the board, will provide organizational leadership for the Foundation’s strategic initiatives to bring national attention and increased public and private resources to lupus, a serious and potentially fatal autoimmune disease.
Andrew Brophy will provide a valuable non-profit perspective to the board, having served on the board of trustees at the ALS Association (ALSA) for nearly 20 years. As a trustee, Brophy served as Chairs of the Advocacy, Communications and Executive Compensation Review Committees. During his tenure, he helped to grow the ALSA Public Policy Conference from 100 to 1,000 participants. Brophy has also built a distinguished commercial real estate career, spanning more than 25 years as a senior executive at Brophy Properties, Inc. in Washington.
“It’s an honor to be elected to the Lupus Foundation of America’s National Board of Directors as the organization continues to lead the way in driving breakthrough medical research and spearheading efforts to advance lupus drug development at every step in the process,” said Brophy.
Barbara Polk is a skilled business executive with more than 25 years of human resources, operations leadership and board governance experience in both the corporate and non-profit fields. Polk will bring a breadth of experience to her role on the board, from advising leadership on strategic human capital and operational issues to mapping balanced growth strategies. Most recently, she served as the Chief Administration Officer at the National Restaurant Association.
“My involvement with the Lupus Foundation of America began with supporting the DC/MD/VA chapter. I’m thrilled to now join the national board of directors as we work to provide education, care and support services to the lupus community while also raising awareness of this devastating disease,” said Polk.
The Lupus Foundation of America has stimulated and contributed nearly $100 million for robust medical research and education efforts, and has helped millions of Lupus Warriors find answers, support and hope. Every day, the Foundation builds upon this momentum to further enhance its efforts to bring an end to lupus.
“We’re excited to welcome both Andrew Brophy and Barbara Polk to the Lupus Foundation of America’s National Board of Directors,” said Stevan Gibson, President of the Lupus Foundation of America. “Their leadership experience and passion will be a great asset to the growth of the organization as we work toward our vision of a life free of lupus.”]]>
The National Institutes of Health today released important new datasets that will help clinical investigators discover new ways to treat lupus and rheumatoid arthritis (RA). The datasets were developed through the Accelerating Medicines Partnership (AMP), that was launched in 2014 as a public-private partnership to spur development of new therapeutic options for lupus and RA. The Lupus Foundation of America is a leading partner of the AMP program.
The new datasets will provide valuable information about the structure and properties of individual cells in lupus and RA disease tissue. Armed with this new insight, researchers will gain a clearer picture of the biological pathways and other factors that cause people to develop these diseases. The data enables investigators to identify specific treatment targets that can halt or impede the progression of lupus and RA, an important step toward developing new effective therapies for these conditions.
“Lupus is the prototypical autoimmune disease,” said Sandra C. Raymond, Chief Executive Officer of the Lupus Foundation of America. “Finding answers that explain what pathways lead to development of lupus may provide clues not only to the causes of lupus but other autoimmune diseases. Our hope is that these efforts will lead to a new understanding of the underlying causes of lupus along with targets for the development of new treatments that will improve the quality of life for all people with lupus.”
Read more about today’s announcement on the NIH/NIAMS website.]]>
“I was searching for ways to make a difference and regain control.”
Laura Kelly, 29, of Hicksville, NY, knows the life changes that lupus brings. Her symptoms began in 2003. She was formally diagnosed in 2007, and then developed kidney disease in 2010.
“Lupus changed my life at a pretty critical time,” she says. “It kept me out of graduate school, and I wound up breaking off some relationships with friends and my then-boyfriend because they just didn’t get it. That’s when I became more involved in learning about lupus and teaching people about it.”
Her go-to source: the Lupus Foundation of America. “I was searching for ways to make a difference and regain control after my diagnosis,” Laura says. “The LFA has given me something to look forward to each year with the Walk event, and participating each year has helped my friends and family to better understand lupus.”
What she didn’t expect was that her efforts to improve her health would lead to a gift both generous and uplifting.
When Laura became engaged in 2015, she was determined to be at her best for the 2016 wedding. She quit smoking and began working with a personal trainer at a local gym. She stuck with it, and this spring, the unexpected happened!
“My trainer and the other trainers approached me about them doing a day clinic, where people would come and pay to use the facility, and all of the proceeds would be donated to the 2017 New York City Walk to End Lupus Now® on my behalf,” she says.
“I’m so touched by it, to see how they really valued me as a person and wanted to help me.”
That kind of support is evident at the Walk, which is why the day is so important to Laura. “The Walk reminds me that I don’t go through this alone—there are lots of other people who are just like me, who struggle the same way I struggle, but then we all come out together to the Walk and we’re all happy and excited to be there.
“The other 364 days of the year, life is unpredictable and with lupus it can be pretty crummy, but for that one day we support each other. And if you feel supported, you can recover.”]]>
Danica finished the Seattle Rock ‘n’ Roll Half Marathon last June as a tribute to her sister and in the process raised funds to help support research and awareness initiatives.
The experience fueled the fire to do more to raise awareness for the disease, which she knew little about before her sister was diagnosed.
“My family was in shock, we were in the dark about the disease – a disease that took my sister’s life shortly after she was diagnosed. We run to honor her, and we run for everyone in the lupus community who cannot do things like this because of physical limitations,” said Danica. They inspire us to keep going, we know that what we are doing is important and we must prevail.”
Now, Danica has encouraged about 30 family members to join her to raise funds and train to run a race to show their support for the lupus community. While many of her family members have signed up for shorter distances, Danica has decided to train for and run the full marathon this year.
“I will never know if I can do something until I try and I have no fear with my family by my side – we support each other and we will help each other succeed, no matter what,” said Danica.
Danica’s family has a mix of experiences with running and being active – from beginner to advanced – but from her perspective, this opportunity is much more than the experience of running in a race. Having the courage to stand up against a devastating disease and do something that will make a difference has been the greatest way that she has found to honor her sister.
Danica has started training for the marathon and she is already excited about race day.
“Everyone is going to finish, we’re going to be there for each other and we’ll never forget why we are doing this because the reason is so important to us,” said Danica. “We’ve made a commitment to do this for my sister and for the lupus community, we have a great team this year and I’m going to fully enjoy every moment.”
Danica will be running the Seattle Marathon on June 10, 2018. Her goal this year is to raise $1500 for lupus research.
Learn more about the program and sign up to participate in the Seattle Half Marathon or Marathon or a future race!]]>
When she started developing symptoms, including the butterfly rash and high fevers, doctors responded by giving her skin creams intended to treat allergic reactions. Soon after, she developed whooping cough, pneumonia and strep throat – all at the same time.
She visited multiple doctors and specialists before her mother finally demanded that doctors conduct tests to figure out the root of her health problems.
Tests confirmed that it was lupus. She then had a kidney biopsy to determine whether or not she needed chemotherapy right away or not at all. Based on the test results, doctors decided to move forward with chemotherapy. Within a week of being diagnosed, Taylor started chemotherapy treatments and began taking prednisone and plaquenil. She was 13-years-old, scared and confused and had never even heard of the disease.
She reached out to the Lupus Foundation of America shortly after her diagnosis to learn more about the disease and gain access to resources to help her cope with lupus.
“When I was diagnosed, me and my family didn’t know much about the disease and we had a hard time adjusting to the new reality, so we reached out to the Foundation to find the guidance we were seeking to help manage lupus,” said Taylor.
The Foundation provided valuable information and support to help Taylor and her family transition to life with lupus, and she recognized through the experience that being a part of the community and giving back by sharing her story were critically important to her.
Soon after, she attended the Foundation’s National Advocacy Summit. Taylor believes that the experience gave her a voice to help support the lupus community. Since then, she has attended several Summits and continues to stay engaged.
“It’s hard for me to see so many people suffering from pain and dealing with the hardships brought on by the disease,” said Taylor. “Being an advocate has given me the opportunity to do something for them.”
Taylor believes that elected officials are influenced by her story, and that her advocacy efforts are helping to raise awareness and encourage support for lupus funding and research.
For Taylor, the Summit also provides her with an opportunity to learn about the latest developments in lupus research and education, as well exchange ideas with other people living with lupus about ways to minimize flares and manage the disease.
“The Summit provides us with hope that progress is being made and more effective lupus treatments are possible,” said Taylor. “I am proud to help Senators and Congressmen understand the devastating impact of the disease by sharing my story.”
This year, the Foundation’s Advocacy Summit will have a special focus on childhood lupus and Taylor believes that it is critically important for children to share their stories as they can have a strong impact on decision makers who can help provide Congressional support for research funding and education and awareness initiatives.
Taylor hopes that more people from across the country will come to the Summit to help build on the successes of lupus advocates that have attended the event in the past.
“We must come together as a community to stand up and make sure that lupus receives the attention that it deserves among the people who can make a difference to lessen the devastating effects of this horrible disease,” said Taylor. “I will never stop fighting – lupus is too often overlooked at the federal level and we need strong voices to represent our community.”
This month, we asked Sharing the Journey participants the following question:
I think what makes relationships challenging with lupus is finding people who understand this disease. For me, this means having fewer, more deeper relationships. It’s important that the other person understands that you’re not always 100 percent all of the time, and accepting of the times that you must cut activities short or simply back out. It also is important for others to be willing to change the way things are always done to help accommodate you on your worst days. I feel very fortunate to have relationships like this, but I’ve also had to minimize the number that I have, simply because some people just can’t wrap their mind around the complexity of the disease. While at first this was difficult for me, I soon realized that it was more important to have people in my life that supported me in all areas of my life. – Roxi
Because lupus is an unpredictable disease I find it difficult to fully express the gravity of the disease when I am doing well. And if I am sick, I often try and downplay it. It can be easy to sugarcoat things. But if you’ve found the right person, you shouldn’t have to do that. – Leslie R.
Lupus has affected my relationships in two main ways. The first is that it negatively affects the time I spend with my friends. Because of the exhaustion I battle as a result of lupus, I often become tired much quicker than my friends and have days when I don't feel up to doing much at all. As a result, sometimes I am not able to spend time with my friends when they are all relaxing together. And often if I do choose to spend my free time with them, I feel tired and irritable the whole time. The strain of getting through the things I am required to do during the day often leaves me with little energy to use when attending social events with my friends. To combat this, I try to choose specific events that I know are important to my friends to attend. I then make sure to get sufficient sleep in the days leading up to it so I have the energy to be myself when I am there. Letting my friends know that I can't attend every "hang-out" is difficult, but letting them know why makes the conversation a little easier. The second way it has affected my relationships is influencing the way some of my friends see me. I have one friend in particular who I don't see very often, but when we spend time together to catch up, she always asks how my lupus is. To me, it feels like she automatically thinks of my disease when she thinks of me, and I wish she would look through my disease to see who I really am as a person. However, I constantly have to remind myself that the reason she is always asking about my health is because she cares about me. Sometimes that care just may not take the form I want it to. – Becca M.
In many ways lupus has strengthened my relationship with my husband, especially. This is partially due to the various healing modalities we have been encouraged to explore. We’ve done some of these healing modalities together and shared what we have learned. Also, lupus led to seizures/epilepsy which has brought us closer. It's been difficult at times because for me there is sometimes a dependency, and for my husband there’s almost a sense of being anxious to ensure he is watching over me. So, it is an interesting dynamic. We are currently in the midst of a thorough inpatient evaluation for several days that will determine my current status with seizures. A process such as this brings us very close to each other. - Betsy
I feel that having lupus has changed my relationships with people immensely, not only positively, but also negatively. The way it has affected me positively is that it drew me closer to my family and friends. I think they realized that life is too short, and you never know what will occur, so you need to enjoy the presence of the ones you really care about before it is too late. I believe that it has affected my relationships negatively because I was very scared to open up and I did not know how to react and cope with my lupus, so I would often shut people out and always hold up a guard against them. That eventually made my relationships stronger because they realized that since it was affecting me so much it had an effect on them too. I will always be grateful for the people in my life that have shown me love and support through my lupus journey. – Kyra S.
Maintaining friendships and relationships can be difficult when you have lupus, but good relationships aren’t just rewarding – they’re also great sources of support in dealing with lupus and other hardships in life. Real friends will understand when you need to stay at home due to fatigue or take steps to accommodate your health needs, and know that there are plenty of ways you can enjoy time together!
Check out this resource to see how your friends can help you live a healthy and fulfilling life with lupus.]]>
Findings from a global multi-center clinical trial investigating atacicept as a potential new lupus treatment were recently published and show promising results. Atacicept works by inhibiting two B-cell activation systems, called APRIL and BLyS. An earlier study suggested this approach was successful in reducing levels of B cells, plasma cells and serum immunoglobulin, all of which related to lupus disease activity.
The purpose of this phase IIb clinical study was to analyze the efficacy and safety of two different doses of atacicept in comparison to the placebo (an inactive or empty medication). In total, 306 individuals were enrolled in this double-blinded controlled study, which means neither the participant nor the physician know who is actually receiving the study medication. Participants were assigned to one of three groups that would receive either 50mg of Atacicept, 75mg of Atacicept or a placebo. Each person received one weekly injection for 24 weeks and then were followed for another 24 weeks to monitor for safety. The efficacy of the treatment was determined by analyzing levels of disease activity as well as whether or not a flare occurred. Disease activity was calculated using the SLE Responder Index 4 and flares were assessed using the BILAG 2004. These are tools used to measure levels of disease activity to determine whether there are improvements among those who receive the study medication.
Using these measures, the researchers found that there was an overall trend toward a decrease in lupus disease activity; however it was not enough to meet the standard set by the primary endpoint (the end goal of the study). Additional analysis, however, found that some improvements were noted when the data were evaluated in more detailed ways. For example, improvements in disease activity were found when the investigators compared the levels of disease activity at the time of receiving the first injection, rather than the level measured when participants first enrolled in the study. In addition, participants who received atacicept, and whose laboratory tests indicated that they had higher disease activity, showed significantly more improvement than those who received a placebo. Lastly, the risk of having a flare was reduced for those who received atacicept injections compare to those who received the placebo. Importantly, the study also found that there was no increase in the risk for having serious complications or infections among those who received atacicept.
Overall, while the study did not meet its endpoint, the findings suggest that Atacicept may be specifically effective for those with high levels of lupus disease activity. The results suggest that additional clinical trials of atacicept are warranted.
Efficacy and Safety of Atacicept in Patients With Systemic Lupus Erythematosus
Results of a Twenty-Four-Week, Multicenter, Randomized, Double-Blind, Placebo-Controlled, Parallel-Arm, Phase IIb Study
Joan T. Merrill, Daniel J. Wallace, Stephen Wax, Amy Kao, Patricia A. Fraser, Peter Chang, and David Isenberg, on behalf of the ADDRESS II Investigators
ARTHRITIS & RHEUMATOLOGY, Vol. 70, No. 2, February 2018, pp 266-276.
Abstract available from the US National Library of Medicine]]>
It was the Foundation's advocacy efforts that opened up the DoD research program for lupus research studies. Research America, a Washington DC-based advocacy organization that works to increase funding for medical research, honored the Foundation last year in recognition of our leadership for lupus research, patient and professional education, and public awareness. Former vice-president Joe Biden praised the Foundation for helping to develop a lupus diagnostic.
A Lupus Foundation of America survey found that on average a lupus diagnosis requires visits to four different physicians over a six-year span. The Foundation has as one of its strategic outcomes to shorten the time to an accurate diagnosis. A delayed diagnosis contributes to poorer outcomes as lupus continues to damage the body's organs without proper treatment.
The collaboration between Exagen and GSK will raise awareness of Exagen's AVISE diagnostic and monitoring tests to a select group of healthcare professionals around the world. The AVISE Connective Tissue Disease (CTD) test measures specific biomarkers in the blood and analyzes that data to determine the likelihood of a person having lupus. The AVISE SLE Monitor is a combination of five advanced tests that help physicians assess a person's level of disease activity. Learn more by reading the full news release.
In this episode, you will learn what is a flare, what factors may cause them, ways to prevent one and how to create a flare plan with your health care provider.
Each new episode from The Expert Series will cover a different topic and will be posted on the National Resource Center on Lupus every third Thursday of the month. Learn more about the series and sign up to receive a notification when new episodes become available.
The 2018 National Lupus Advocacy Summit features educational programming with a special focus on childhood lupus as well as engaging discussions on the latest in lupus research and drug development and other issues of importance for the entire lupus community. The two-day event also includes interactive sessions that will prepare you to meet with your Members of Congress on the second day of the Summit, while empowering you to advocate throughout the rest of the year.
This is a critical time to make your voice heard and ensure that lupus is a priority on Capitol Hill.
Singer Selena Gomez brought lupus awareness to new heights in early 2017 when she shared her compelling story about having a kidney transplant after lupus had ravaged her kidneys. The sharing of her experiences helps give people a greater understanding about the life-threatening impact of lupus and boosts public demands for greater funding to support critical lupus research studies.
As we reflect back on the past year, one thing is clear – there has been significant progress, not only in awareness, but also in lupus research and advocacy efforts to secure additional research funding for lupus. We are encouraged by the advances of 2017 and look forward to reporting on more successes during 2018 and beyond, with great hope of a better quality of life for all people affected by lupus!
Great Progress in the Development of an Arsenal of New Treatments - Results of several clinical trials provided good reasons for people with lupus to remain hopeful that more effective and tolerable treatments are right around the corner.
New Self-Administered Formulation of Benlysta® - The U.S. Food and Drug Administration (FDA) approved a new formulation of Benlysta® (belimumab) to treat subcutaneous (SC) lupus (lupus that affects the skin). This new formulation provides a less invasive method for administering Benlysta, allowing people with lupus to administer the biologic themselves at home as a once-per-week self-injection, rather than traveling to a medical facility for monthly infusions.
New Technique May Help Assess Skin and Kidney Damage - A large, multicenter National Institutes of Health- and industry-sponsored research project called “Accelerating Medicines Partnership” (AMP) has produced remarkable preliminary results showing that a new technique, called single cell RNA sequencing, using tissue from kidney and skin biopsies, may provide new insights into what causes lupus nephritis and how it develops, and perhaps providing a better way assess damage in skin and kidney tissue.
Gut bacteria and lupus disease activity - Researchers discovered that people with high lupus disease activity had more of a certain bacterium in their guts than those with low disease activity. These bacteria can alter the immune response suggesting that the gut may play an important role in developing lupus and in tracking lupus flares.
Efforts to Identify People at Risk for Lupus and Prevent Damage - Researchers have found a strong link between trauma and posttraumatic stress disorder (PTSD) and the onset of lupus. With this information, doctors may be able to better identify who might be at risk for lupus and prevent flares by reducing stress.
Stem Cell Therapy Trial Moves Forward - In December, the Lupus Foundation of America announced it will provide $3.8 million in funding to support the first clinical trial in the United States to evaluate mesenchymal stem cells (MSC) as a treatment for lupus. The study will evaluate whether this stem cell therapy can decrease lupus disease activity, reduce the need for medications like steroids, which have harmful side effects, and prevent further damage to vital organs.
Congressional Appropriations for Lupus Research and Education Top $13 Million – During 2017, together with our national network of lupus advocates, we stimulated funding for lupus research and education programs within the US Centers for Disease Control and Prevention, the Office on Minority Health and the Department of Defense (DoD). The DoD funding led to creating a dedicated lupus research program. This new program provides lupus investigators an additional funding source to support their important studies. Additionally, the Foundation successfully advocated Congress to provide $5 million for this new program in 2018 that will focus on why the impact of lupus is so different in each person living with the disease.
Giving People with Lupus a Stronger Voice
A New York man orchestrated a surprise engagement and wedding in one night in order to alleviate the stress of wedding planning for his bride.
The bride, Nicole Rios, suffers from lupus, a condition that is aggravated by stress.
Her now-husband, Danny Rios, spent more than five months planning in order to both propose to Nicole Rios and marry her in a span of less than two hours, as well as keep it a surprise.
“I give women so much credit for all the planning they do for weddings,” Danny Rios said. “I kind of turned into a ‘bridezilla’ during it.”
Danny Rios came up with an idea in August to surprise his now-wife when they returned to their Smithtown, New York, home from a trip last month, just days after Nicole Rios’ birthday.
“Nicole kept on saying how she wanted to have people over for an engagement party and then surprise them with a wedding so I knew she was OK with a wedding in the backyard,” he said. “I know it’s a battle with her illness already and when anything comes up she gets stressed out about it.”
He picked out the engagement rings and wedding bands on his own and recruited Nicole Rios’ mother for help picking out the wedding dress. The pair bought the same dress in two sizes and then had them hemmed to fit Nicole Rios’ mom, who is her same height.
Danny Rios kept everything related to the wedding in a safe. When he and Nicole Rios traveled just before the wedding, his parents came to stay at their house and had specific instructions to follow to prepare the house.
“I wrote down what had to be done and I said, ‘I don’t care what anyone says, what’s on this paper is what has to be done. It’s gold,’” Danny Rios recalled.
On Dec. 8, Nicole Rios thought a surprise birthday party was going to happen when she arrived home from the airport to see their backyard decorated with lights.
“I didn’t think we’d even be getting engaged for at least a year,” she said. “I was ready to get in my pajamas … I didn’t think this was going to happen.”
Minutes later, Danny Rios got down on one knee and proposed in front of family and friends who flew in from across the country.
After Nicole Rios said yes, she was surprised again in a quieter moment inside the couple’s home.
“Danny said, ‘You know how much I love you and if you want we can do this tonight. All of our closest friends and family are here,’” she recalled. “He told me to turn around and a dress and tux were hanging there.”
Less than two hours after becoming engaged, Danny and Nicole Rios became husband and wife in a backyard ceremony officiated by Danny Rios’ dad.
Only the couple’s immediate family knew that a wedding was going to happen that night. Those gathered erupted in cheers when told Danny and Nicole Rios would tie the knot as well.
“It was exactly what I would have wanted,” Nicole Rios said. “I really couldn’t have imagined a more perfect way to marry him.”
Both Danny and Nicole Rios, who blogged about the night, said they hope the attention their wedding receives drives attention to lupus too.
“We want anyone who has it to know that if you have lupus, it's a crummy disease but you can still find happiness,” Danny Rios said. “It’s out there. Don’t stop looking.”
View all photos by Stephanie Scapellati
That’s what happened to George Mora, 42, of Tampa, Florida. He was diagnosed with lupus nephritis in March 2016, after spending a week undergoing tests in the VA Hospital. His 16-year-old daughter Catlyn was diagnosed with lupus a month later.
It’s also why the family’s Walk to End Lupus Now® team has a “2” in it: ‘2 Mora Steps Closer to a Cure.’ As for the rest of the catchy title, George explains that when he was growing up, people would jokingly say, “Hey, can I get one Mora?”
“We were kind of playing on that,” he says.
The Moras’ fundraising for the Walk grew exponentially in 2017, its second year—thanks in large part to a stranger.
“My sister-in-law works for an individual who owns a racetrack in Ocala, Florida,” George says. “She asked him if we could set up a booth at a big dirt car race early last spring so we could have a raffle fundraiser for our Walk team, and he agreed. He even provided a flat screen TV to include in the raffle! It was a wonderful gesture from him. And by being held early in the year, the event kick-started a lot of other folks to get their fundraising efforts started.”
Mora’s advice to others on fundraising is, “No is just a word—don’t be afraid of hearing it. You will also often be surprised by people’s willingness to help.”
Today, Catlyn’s lupus is under control and she’s back at school, taking honors classes and doing well. George has had a harder time, due to medication side effects and lupus itself. “I have to be cautious of what I do now,” he says.”I can’t just be, like, ‘Come on, let’s go, let’s do this.’ There are so many things I’m still learning about my body.”
But he’s also learned that healing comes from outside himself as well. From his employer, who helped him both financially and by making changes to his job duties so he no longer has to travel. From his wife and his 23-year-old son, who comforted him and Catlyn during the dark early days of their diagnoses. From his sister-in-law, Paula, who asked to be the captain for their Walk team although she had no experience in fundraising.
And then there are all the people who attend the Walk events.
“Seeing the friends and family supporting their loved ones with lupus is a great feeling,” George says. “We even have friends and families who have lost their loved one to lupus and still attend the Walk to continue the support for a cure. The positivity and the spirit of our fellow lupus warriors keeps Catlyn and me motivated to keep moving forward.”
The Spring Walk to End Lupus Now® season is NOW OPEN. Find a Walk in your community and register today to feel the power of the movement to end lupus.]]>
This month, we asked Sharing the Journey participants the following question:
My New Year’s resolution is to take time to myself and really listen to my body, which includes trying to understand my SLE lupus more and being okay with it. Just accepting myself and understanding that it's okay to have days that I can't do everything I want. Giving myself breaks when I need them and not feeling guilty about it. – Ellena G.
My resolutions for 2018 are to take better care of my health and learn new ways to cope with stress. I do not exercise or eat healthy like I should. I also get stressed out easily from working at a hospital and attending college full-time. It is good to be in great health and become stress free when you have lupus because stress can cause you to flare up and relapse which may cause you to end up in the hospital. – Kyra S.
My resolution is just to remain positive throughout the year. Having a positive mindset affects a lot of things, including health. Being stressed out and not indulging in self-care can affect my health and in turn cause a flare. I had two hospitalizations last year, one on my birthday, and I don’t want to go through that again this year. The goal is to stay out of the hospital this year. I’m looking forward to seeing what 2018 has in store for me! – Amber O.
My resolution is simple yet so dang difficult for me! I plan to take care of myself before I take care of others. Being in the social justice/law/community outreach world, you sometimes get so caught up in fighting for everyone else that you don't realize you've neglected yourself until it's too late. I'm going to do better, so that I can be better. – Kayla B.
I have always thought that New Year’s resolutions are very clichéd and most people end up giving up on theirs. I have always just looked at the New Year as a fresh start to be better in ALL areas with no specific goal in mind. Having lupus can make it especially challenging when you set goals and then don’t meet them due to feeling bad. Overall, I would like to be more flexible and accepting of my illness when things don’t go my way. I also want to make more of a point to travel with my family, since this is what makes me the most happy and content. – Roxi A.
For my New Year’s resolution I want to pledge to eat healthier and have that lead to my overall health improving. I have been going to the gym regularly and have been starting to make better eating choices. I hope to continue this pattern in hopes to see an improvement in my lupus as well. Happy New Year! – Kylie K.
In 2018, I’m going to focus on healthy food choices. As a typical college student, I often just eat whatever sounds good or is easy to make. This seems efficient at the time and I usually burn off the calories with my active lifestyle. But the food I eat doesn’t always make me feel great or give me the energy to perform my best. What you eat affects how you feel and how much you are able to do. I am excited to see how much more I can achieve when I make an effort to spend a little extra time making healthy choices and cooking great food. With an unpredictable disease like lupus that can often make me feel sick for no reason, I like to find things like food that I can control and that directly impact how I feel day to day. – Becca M.
As always, I am keeping up with walking and exercise which I could not do when I was initially diagnosed due to significant heart valve damage and, now after 39 years and with my lupus healed and no evidence of autoimmunity in my system, my valves are stable partly due to regular aerobic exercise. I have decided to continue with the basic diet that I settled into that was developed for folks with autoimmune conditions by a doctor who had disabling MS and was able to regain function through diet. It involves eating lots of veggies, especially the broccoli family as well as all the colors of veggies and also fruits. I have done it with a Mediterranean diet format and very few carbs, gluten free and sugar free. The other thing that I strongly suggest is that we find ways to love ourselves. Feel into our hearts and send that love into our own hearts and also to areas of pain and take control rather than be controlled. – Betsy H.]]>
This month, the Lupus Foundation of America is launching The Expert Series, a new educational video series featuring empowering presentations from leading lupus experts with a focus on helping people live well with lupus. Each month, lupus experts will offer invaluable insight on a variety of important topics, providing people with lupus with the knowledge they need to better manage the disease.
The first segment from The Expert Series will be available on the National Resource Center on Lupus on January 18 and focus on preventing and managing flares. The next two monthly segments will cover financing your medical care, and managing medication side effects.
Learn more about the series and other topics that we plan to cover throughout the year.
We hope you find The Expert Series to be a valuable resource that enhances your lupus knowledge and helps you or someone you care about better manage this devastating disease.
If you want a notification when new episodes of The Expert Series become available, subscribe below!
My mother Dorothy is my Lupus Hero.
She was diagnosed with lupus when I was only three years old. Her case was so severe that doctors thought she only had a few weeks to live. Fortunately, they were able to bring her back from the brink. Their efforts gave my sisters and me ten more years with her.
We are so grateful that she had the opportunity to see us grow up. Those ten years were hard though. I remember in the kitchen she kept three blue cups on three shelves. Each cup had 1/3 of the pills she had to take each day. So. Many. Pills. And dialysis. And bloodwork. And hospital stays. She fought so hard to stay alive. But she lost. I was just thirteen years old when she died.
So I keep fighting for those who live with lupus. Every year my family and friends come together and fundraise for the Lupus Foundation of America for the Walk to End Lupus Now Los Angeles Walk. We fundraise in my mom’s memory and in support of the many brave people still fighting this terrible disease. We don’t want to see another family torn apart by lupus.
My mother isn’t the only person I know touched by lupus. I met my best friend because his mother has lupus. Sadly, my best friend was also recently diagnosed with discoid lupus. I’ve also been amazed by how many people who support me in the Walk have confided in me that they too have lupus.
Lupus is such a terrible disease, and not enough people know about its devastating impact on families like mine. We need more funding for treatments and cures. Working with the Lupus Foundation of America, I know that I’m raising awareness of lupus so that people can get diagnosed more quickly. I also know that they are supporting research that will hopefully lead to safer and more effective treatments.
Join me in the fight against lupus and make a donation to the Lupus Foundation of America’s year-end campaign. You can be a Lupus Hero and help those living with this brutal disease.
The study will determine if MSC stem cell therapy may diminish the often debilitating long-term effects of lupus, reduce the need for medications like steroids, which have harmful side effects, and stop damage to vital organs. Results from initial studies in China show a significant majority of patients whose disease did not respond to current therapies benefited from this type of stem cell therapy, and few patients experienced adverse reactions. In order to continue, this therapy must now be tested through randomized placebo controlled clinical trials to show that it is both safe for people with lupus and more effective than the standard for treatment alone. For this study,one-third of the participants will receive a placebo infusion and the other two-thirds will receive MSC stem cells taken from the umbilical cord of an unrelated donor.
The phase II trial is now moving forward and expected to open enrollment in early 2018 and will recruit a total of 81 individuals with lupus to participate in the study. The trial will also expand to six additional academic centers in Atlanta, Chapel Hill, Chicago, Los Angeles, Rochester, New York City and San Diego.
If you are interested in participating in a clinical trial, visit the clinical trials database.
Learn more about our stem cell research.