May is Lupus Awareness Month! Each year we make a great effort to bring lupus to the forefront of the public eye. We do so in many ways, through radio, TV, billboards, social media, city proclamations, educational programs, kiosks, websites, and so much more. It is crucial to raise awareness about lupus to gain traction to find its cause and cure. For there to be no lupus, everyone must first know it.
May is also, other than December, the most celebrated month of the year. It is filled with graduations, showers, weddings, anniversaries, and communions, but the number one celebration is mothers.
Of course, after all, everyone has a mother or has had a mother figure in their life. I decided to look up the definition of a mother. It was an exciting task. The world has changed so much, so I was excited to see how the definition had changed. Unfortunately, my search made me dizzy and scared. Try searching for yourself sometime. So interesting, but I am fearful of sharing the results.
If we look at the word mother as a verb, it makes better sense. It includes bringing up a child with care and affection. Synonyms: bring up, take care of, look after, rear, support, raise, foster, parent, tend, feed, nourish provider, and note there is nothing about love. So I canned my efforts, and decided to form my own definition.
In life, there is no stronger connection between a child and their mother, no matter how the two came together. The relationship can be complex at times, and at other times, especially during those testy teenage years, it can be an uphill struggle for both.
A mother’s love for her children is pure and unconditional. She presents her love, unselfishness, kindness, understanding, and caring nature even when you are at war. The bond between a child and mother is forged through nature and nurture, and is undeniable.
To your mother, you are the most beautiful person formed from her love. You are the smartest, kindest, and most creative person in the world to her. She does not see your shortcomings.
Believe it or not, we will most likely become her as we get older. She can help make you a better person, guide you, be your confidant, and be your safe place. She is a teacher. She taught you how to dress, to eat with a fork, brush your teeth, and be a functional part of society. She has the power to inspire you to be a better person. Your mom is your teacher because you trust her.
However, a mom does not have to be biological in order to be your mom. There are a host of others that may have risen to fill her shoes. Moms come into our lives in all different ways.
So, this is a reminder to mothers and children. Call your mother, visit her, and today write her a letter. Be authentic and focus on the positive, do not bring up old arguments, emphasize your love for her, and make it about both of you and not the other family members. Be thankful and highlight happy memories and conclude with deep gratitude. Ask nothing of her.
The digital world is taking us all by storm. Do not just send an email to your mom. They have things called stamps and envelopes, and most people love getting handwritten letters. First off, letters are very personal. You are using your words and stories to express how much your mom means to you. And Mom knows your handwriting better than anyone.
Second, handwriting a letter takes time, which shows you care enough to try. And, of course, heartfelt and thoughtful letters often become treasured keepsakes to be reread repeatedly as years go by. Writing a letter to your mom makes a memory for her.
Think about boosting her spirits; simply sit down and express your thoughts. It doesn’t have to be award-winning poetry, it just needs to be from the heart. Imagine what a pleasant surprise it would be for her to go to the mailbox and find a love letter from her child. Priceless.
Is Mom gone?
I feel your pain. There is a giant hole in your heart. Although we cannot be with them, see them, and hear them, they are always with us. When I pass the bathroom mirror, I look into it and say, “Mom is that you?” I find myself repeating what she told me that I ignored time and time again. Darn, it… she was always right.
Write her a letter anyway. She will read it, as she has not left you. She is threaded throughout your life, and it will still create a wonderful memory for her and you.
Not a good relationship with your mom? Sadly, this happens, and I cannot imagine that journey. Write a letter anyhow. Think about your feelings and how you can mend the sorrow. Do not fill it with hate but try working on forgiveness. It is the greatest gift you can give yourself. What have you learned from this negative relationship, and how do you not duplicate it with your own child? Make this about change for you. Let go of the sorrow or grief you may have bottled up.
Get ready to write a letter to your mother. She will cherish it. She will be proud. Her heart will tingle with joy. Take the time, and share your love. So, I am asking you today… not tomorrow, but today, write a letter to your mother before it is too late.
I hope you enjoy this issue; it is about mothers with lupus, and we are thrilled to share their stories with all of you.
I want to leave you with one last reflection on my mother. When I was 27, she dragged me off to a lupus meeting. As they were seeking volunteers for one reason or another, my mother grabbed my arm and raised it hard and high. I was mortified, but look at me today… Who knew I would be the CEO of a significant chapter making positive change in the world while living a purposeful life? Mothers always know best.
I miss you, Mom, and thanks for guiding me in the right direction for my life. I wouldn’t have it any other way. After all, “mother always knows best.”
Suzanne Tierney President & CEO Lupus Foundation of America, Greater Ohio ChapterPg. 9-12
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Pg. 30 Staff Page
Patient Story: I am a Mom with Lupus
Happy Spring to all! The warmer weather and the return of flowers, green plants, and new life provides hope, renewal, and fresh new starts. This is true for the Patient Navigators (PNs) and their activities at the Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC).
As you know, patient navigators provide lupus awareness, education, support, and information about our chapter’s resources to lupus patients, caregivers, families, friends, healthcare providers, and the general public across Ohio. Since the start of the year, the PNs have been working on several projects to accomplish their mission. Many of these projects were actually ongoing initiatives that were placed “on pause” due to the
pandemic. We now have the opportunity to slowly move forward with them again, including some in person activities and events.
The Community Partnership Project’s goal is to create a comprehensive network for the promotion of resources to lupus patients across Ohio. Patient navigators reached out to diverse community agencies (health clinics, mental health services, housing resources, food resources, durable medical equipment resources, etc.). We let these agencies know about the education and resources our chapter provides, and we learned about the services these agencies offer.
Seventeen agencies agreed to become community partners with
us. These agencies received written information about lupus and the LFA, GOC that they will share with their clients and coworkers. The agencies also will be receiving a monthly newsletter with up-todate lupus and chapter news. A link to each agency’s website is included on our Toolkit for Patients resource page, so that lupus patients can reach out to the agency directly.
The LFA, GOC participated in two health fairs in April: The Grand Lake Health System Community Health Fair in Celina, Ohio and the 12th Annual Business & Health Expo in Toledo, Ohio. PNs were on hand to answer any questions about lupus and the LFA, GOC and to provide written educational information and resources.
We have been invited to participate at an educational and fundraising event hosted by My Pets Vet, 8717 Fields Ertel Road, Mason, Ohio on May 20, from 12 - 3:00 p.m.
If you are in the area, please stop by and say hello. Our local PN will be more than happy to answer questions and provide information. Interesting fact: dogs can develop lupus too.
During March and April, the PNs completed another round of calls. Patient Check In Calls or Wellness
Calls are our attempt to reach out to lupus warriors, to “check-in” and see how you are doing and to see if there is anything we can do for you. Check In Calls are a great way for lupus warriors to connect with us, so that you can ask questions about lupus and learn about the free resources and services that our chapter has to offer.
Lupus warriors may tell us that all is well, and we love to hear that
you’re living the best you can with your lupus. Sometimes, you have many questions and requests; and we may need to do some research or refer you to other organizations. And, sometimes, listening and providing an empathetic ear is the best support we can provide. No matter the request, PNs are ready to do our best to provide whatever help we can.
Among the many awareness activities in May, PNs are contacting cities throughout the state, to shine a light on lupus and the LFA,GOC. The PNs request that the city consider issuing a proclamation declaring May as Lupus Awareness Month. By issuing a proclamation, a city participates in our nationwide campaign to raise awareness about lupus.
Last year, we received proclamations from Ashtabula, Canton, Cincinnati, Cleveland, Findlay, Lima, Mayfield Heights, Toledo, Wickliffe, Willowick, Willoughby Hills, and
Youngstown. We hope to spread awareness to other cities this year.
This yearly summit is an educational event for healthcare professionals. It returns to in-person learning, bringing together world leaders in immune-based therapies and addressing cutting-edge topics in immunology and rheumatology on May 11-13, at the InterContinental Hotel and Conference Center in Cleveland. The LFA, GOC is endorsing this educational program, and we will have a booth at the conference. If you are attending this event, please stop by and say hello.
As you can see, we are busy reaching out to lupus warriors; providing education, assistance and support; and raising awareness about lupus in different ways. We love connecting with you! If you have any questions or requests, please email us at info@lupusgreaterohio. org or call us at 1(888) NO-LUPUS (888-665-8787).
The Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) is excited to announce the 2023 Cleveland Walk to End Lupus Now®! The LFA, GOC welcomes everyone to join the largest event of the year taking place on Saturday, September 30, 2023 at 9 AM. Participants can attend either in-person at Margaritaville in the Flats East Bank (1150 Front Ave, Cleveland, Ohio 44113) or virtually through our online platform.
The Walk To End Lupus Now® is a nationwide movement stimulating continuous steps toward the organization’s shared vision of a world without lupus. These events are held throughout the country and are meant to empower individuals to make an impact as fundraisers. Our fundraisers, or “walk warriors,” directly contribute to research devoted to finding the cure to lupus, while also helping fund local patient programs of support, education, and advocacy for Ohio.
Where do you come in? We need you to become a walk warrior and start your fundraising campaign to support the LFA, GOC! After you fundraise, join us, lupus patients, and other supporters at Margaritaville where we will celebrate the results of everyone’s combined fundraising efforts. The celebration will be followed by a noncompetitive, group walk along the sidewalks in downtown Cleveland. We walk to raise awareness of lupus and rally public support for those suffering from it. When you take part in the 2023 Cleveland Walk to End Lupus Now®, your contributions strengthen the patient services and programs our organization offers to lupus patients across Ohio.
We are excited about our newest walk venue, Margaritaville in the Flats East Bank. The LFA, GOC has had great experiences with this location. In December of 2018 and 2019, Margaritaville took part in Cleveland’s 12 Bars of Charity fundraising events. Our organization has also enjoyed previous Cleveland walk routes through the east bank of the Flats and being able to walk along the river. Join us on Saturday, September 30, 2023, for the Walk to End Lupus Now® as we return to the Flats and Margaritaville! We will have entertainment and activity booths to visit, along with our program presenting our top fundraisers. We will have three route options, providing different levels of difficulty:
• The 5K is the “Full Route.”
• The shortened “Alternative Route” is 1 mile long.
• There will also be a 0.25-mile “Butterfly Stroll” (Designed for participants with limited mobility).
An estimated 60,000 Ohioans are living with lupus, an autoimmune disease in which healthy tissue becomes a target. This immune reaction generally involves inflammation that, over time, can cause significant damage anywhere in the body. Lupus is a chronic, often lifelong condition with no cure. Thanks to the funds raised by our incredible walk warriors, the Lupus Foundation of America (LFA) has contributed to every major breakthrough in lupus research since 1977. The LFA is the only national force devoted to solving the cruel mystery of lupus, and it has supported over 450 groundbreaking research studies at top medical institutions. While scientists work to find a cure, the Greater Ohio Chapter of the LFA provides comprehensive patient resources. The LFA envisions a world without lupus, and until that vision is realized, the LFA, GOC is dedicated to providing support to the people living with its brutal impact.
The Walk to End Lupus Now® encourages participants to raise money in support of the work done by the LFA, GOC. In the past 5 years, there have been 9 Walk to End Lupus Now® events in Ohio. These incredible fundraising events have raised over $400,000!
The 2023 Cleveland Walk to End Lupus Now® attendees will experience firsthand the strength behind our combined efforts to end lupus. Register now, create your walk page, set your individual fundraising goal, and begin soliciting donations from your network of supporters.
Our chapter has continued the fight to find a cause and a cure for lupus even through the difficulties of the pandemic. The challenges have been many, but in the past several years our chapter has continued the good work by:
• Launching a new, patient-centered website with a comprehensive digital toolkit for lupus patients, caregivers, and healthcare providers.
• Distributing a lupus toolkit to over 5,000 healthcare providers in Ohio.
• Developing over 75 community partnerships with state and healthcare agencies.
• Delivering educational programs and events to empower patients with knowledge.
• Educating over 460 healthcare professionals across Ohio on lupus, symptoms, and medication.
• Creating a quarterly publication, the Living with Lupus magazine, which includes patient success stories, updates on medications and research, helpful tools, tips, resources, and more.
• Hiring, training, and implementing twenty patient navigators to provide support services and serve those living with lupus as a valuable resource.
Thank You to Our Generous Presenting and Branding Sponsors:
“Everyday is a new day to be ambitious for patients. Behind every educational effort, is an opportunity to improve the life of a patient, their family, and an entire community.”
– Sherrita Dorsey, RN, MSN, FNP US Specialty, Advocacy and Patient Engagement Lead
The GSK PLACE Hub includes English and Spanish tools and resources to help support patients like you:
• Webinars and podcasts with our PEL team, healthcare professionals, and other patients
• Sharing best practices on dealing with financial and insurance matters
• Information on shared decision-making and communicating with your healthcare team
• Videos, brochures, and resources designed with patients in mind
By Kimberly Wright
I was at the hospital the night my niece was born. Unfortunately, we weren’t at the same hospital! I was five months pregnant with my daughter Avery, and that week at work had been stressful. It was 2008, the height of the housing crisis, and we were facing layoffs. I was exhausted, and my chest hurt when I tried to breathe. Because my pregnancy was considered high-risk, I was admitted immediately to Ohio State University Hospital for an overnight stay and observation. All this happened while my niece was being delivered at a hospital across town! This was just one of the many times since I was diagnosed with lupus that I missed out on important events.
I was 22 when I was diagnosed with lupus; and thankfully, I only had a mild case. Symptoms included joint pain, chest pains, and some fatigue, but they were all very manageable. (I wasn’t new to having health issues. When I was 13, I’d been diagnosed with Spondylolisthesis and had back surgery). My lupus always felt like my back issues; they were annoying but minor inconveniences. This was true until I got pregnant, and then my diseases both came back to haunt me.
I was diligent about preparing myself for pregnancy. I worked out and kept myself strong; but even with my preparation, I
had to schedule a c-section two weeks earlier than my due date. The doctors wanted to avoid the contractions and added stress and pain it could cause. When I was suddenly rushed to the hospital because of my lupus at five months, it occurred to me that this was a big deal. I realized that day that not taking care of myself, both physically and mentally, didn’t just affect me anymore but the life and health of my soon-to-be daughter. I’d find out very soon how serious this illness could be, and how quickly it could be much more than a minor inconvenience.
During my pregnancy, my doctor kept me on all my medications.
He said it was a greater risk to my health and the health of my baby to be off them. Synthroid for Hashimoto’s and Plaquenil for the lupus - my autoimmune diseases came in twos! Avery was born at a tiny 5 lb, but thankfully, she was healthy and happy. I wish I could have said the same for myself!
Shortly after Avery was born, I suffered from debilitating fatigue and serious joint pain. During this time, my mom and my husband were my sounding boards, but guilt set in on how much I was burdening them. My mom is the best support person anyone could have. Being the mother of a new mom with lupus is tough, and I am extremely lucky because I could not do this without her! However, I knew then that I needed to seek additional help.
After 10 years, I still hadn’t met anyone else with lupus. I felt like I was on an island, even with the support of my family. I knew I needed help in searching for other forms of treatment, but didn’t know who to turn to for help. Thankfully, I found the Lupus Foundation of America, Greater Ohio Chapter. The chapter sent me information about a clinical trial for Benlysta. I was enrolled in the trial shortly thereafter.
My labs immediately improved, and it was like I had a new life! I could play and have fun with my daughter with less fatigue. It made all the difference as a mom to have energy again! The trial lasted for a year and a half. But after it ended, we couldn’t afford the treatment, and I had to stop taking Benlysta.
The next year or so, I tried so many different medications. These medications didn’t work, or they worked but reduced my white cell count to dangerous levels. I continued to suffer and
“My mom is the best support person anyone could have. Being the mother of a new mom with lupus is tough, and I am extremely lucky because I could not do this without her!“
so did my ability to be the mom I wanted to be.
One night after picking Avery up from daycare, I had to pull over on the freeway because I was too tired to drive home. I heard my toddler say to my husband when he arrived, “Mommy can’t get up, she’s too tired, Daddy; she had to take some naps.” It was heartbreaking.
We are so lucky to have this perfect child, but we were faced with
tough choices because of my lupus. We decided not to risk my health or ability to care for her, by not having more kids. However, we did see a light at the end of the tunnel. The drug company, who made Benlysta, removed income requirements and, after a change to private insurance, I could now get the treatment that had become a life saver! I could have more energy to be the mom I wanted to be.
Fast forward to today, I am a happy mom to an extremely skilled 14-year-old World Champion Irish dancer as a member of her Junior Figure team! She is amazing, and she is both empathetic and understanding of me and others around her. She understands I have a limited number of spoons (energy), even with Benlysta helping me. That is why we surround ourselves with people who get what it means to have an autoimmune disease and a finite amount of energy to spare.
Being a mom to an Irish dancer means a LOT of travel. The number of spoons it takes to drive! My best dance friend frequently offers to drive because she understands my condition. I trust her with my child when I just can not manage anymore. My friend has taken Avery to competitions when I have been sick; and she is her other mom when we are traveling, and I need to rest. Avery has accepted that I can’t always do everything everyone else can.
“We are so lucky to have this perfect child, but we were faced with tough choices because of my lupus.”
She has her other dance mom who gladly does “all of the things” in my honor to make sure Avery doesn’t miss out on the fun stuff!
Being a mom with lupus means surrounding myself with people who care and understand. I am extremely lucky to have a husband, parents, and friends who understand and support me.
I am grateful to the Greater Ohio Chapter and how they helped me
find my people and my treatment. I am grateful how they allowed me to be an advocate by facilitating a support group for others like me! Avery has been my greatest supporter! She has joined me for every meeting, as has my mom.
I have a wonderful supportive community! It takes a village to be a mom with lupus, and I found mine through the Lupus Foundation of America, Greater Ohio Chapter!
“Being a mom with lupus means surrounding myself with people who care and understand...”
Oh, sweet mum! I've been blessed to have you. I couldn't do this without you. You really are the best, and I love you.
Mom, you were right! Always! I just didn’t know until I got old!
Mom, I wish you would have been in a better place to have been a good parent to me.
Dear Mom, I want to express my gratitude to you for being an amazing mother not just to your children, but also to everyone around you. Your heart is as powerful as a lioness and shines brighter than the sun. Thank you for illuminating our lives with your warmth and love.
I love you!
Mom, I miss you so much. I want you to know that I'm doing the best I can. And I know you'd be proud of me. Lupus is wearing me down, but I'm fighting. You taught me strength and unconditional love. Thank you Mom. I love you.
Stay up-to-date on everything we’re doing by joining our mailing list. You will receive a monthly newsletter, support group reminders, Walk to End Lupus Now® updates, research news, and more. Sign up now: lupusgreaterohio.org/stay-informed
Text “NOLUPUS” to 833-4490800, complete your contact information, and be sure to opt in to receive important lupus updates directly to your mobile device.
Join us on our social media platforms to stay connected: lupusgreaterohio.org/stay-informed/ get-social
Do you have an idea to support the mission? Give us a call at the office to discuss and plan your own fundraising activity to benefit the LFA, GOC. Here are a few examples of virtual events that people have coordinated in the past: Pampered Chef Party, Online Auction, Charity Video Game Tournament.
If you are interested in hosting a third-party event, reach out to us for our official guidelines and an application.
a cohesive voice heard in Washington D.C. that ensures the lupus agenda is at the forefront of the legislature. Last year’s National Lupus Advocacy Summit was held June 26 - 28 and featured a few of our amazing Ohio advocates. Thank you to those who participated!
One-year: $25 Lifetime: $200 lupusgreaterohio.org/get-involved
Each year, the National Lupus Advocacy Summit brings together the lupus community to pursue a collective vision of a world without lupus. In addition, we help to ensure there is
We invite you to register to be a lupus advocate in Ohio. Our current initiative is to keep lupus in the state budget for the new biennium. Much of the educational and support programming produced by the LFA, GOC over the past two years has been a direct result of the funding provided by the state of Ohio and the Ohio Department of Health. It is imperative that we let Ohio’s leadership know the importance of keeping lupus in the public health agenda. lupusgreaterohio.org/ get-involved/advocate
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For more information on ways to give, please visit lupusgreaterohio.org/get-involved/donate or call our office at 1 (888) NOLUPUS.
$1,000 FUNDS EDUCATIONAL SUMMITS FOR OHIO
$500 SUPPORTS 8 NEW PATIENT EDUCATION CLASSES
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PROVIDES FINANCIAL AID FOR MEDICATION CO-PAYS $100
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My name is Darnell. I am 29 years old. I’m currently an Intervention Specialist in Euclid, OH. I also coach and run my own youth sports organization. My mother has been one of the biggest motivating factors in my life. She is resilient. She is courageous. She is a WARRIOR! However, it hasn’t always been like that.
Growing up with a mom having lupus was a whirlwind experience for my brother and me. I started seeing changes in my mother after my brother Dylan was born. I was eleven, and I remember being excited that I was finally going to be a big brother. Once they both came home, my mother seemed to slow down. She was in bed a lot, and I found myself doing
more for both of them. As my age increased, so did my responsibilities. I was one of my brother’s providers and one of my mother’s caretakers. I was afraid. At the time lupus was such an unknown disease, and I knew my mother thought it was a death sentence.
Routines changed. In the summer, I would go to football practice and pick my brother up from daycare. I didn’t have to, but I felt like I could shoulder some of the burden. This added to my load. My mom couldn’t make it to every game. Sometimes she would sit in the car and watch because the temperature was off or the weather elements were at play. I didn’t have a mom out there scream-
“My mother has been one of the biggest motivating factors in my life. She is resilient. She is courageous. She is a WARRIOR!”
ing for her baby, but I did have a mom who embodied the essence of quiet strength. That rubbed off on me. Some days, it was tough, but I kept pushing because I had to exude the warrior spirit that is in my mom. There was a brief period when I thought my mom wouldn’t see me graduate high school. I even cried during my senior speech because of how impactful her journey had been on my own.
I always had people question how old I really was because I always had Dylan with me everywhere I went. They would ask, “Is that your son?” and would say, “You have a beautiful family!” They were surprised when I revealed that I was 15,
walking with my little brother to grab a bite to eat or walk to the store. My mom’s diagnosis resulted in an early entrance into adulthood. I felt I had to shoulder the responsibility of providing for my family and being a protector and an example to my brother. I took him everywhere with me. College was tough because I was so far from home, and I felt like I needed to be there for my mom. Baby brother stepped up and took over the responsibility. When I came home, I was face to face with a young man now who had taken care of our mom while I was gone. As time progressed and my brother started to become a competitive athlete, my mom would work the concession
stands at the games because she couldn’t sit in the bleachers. She couldn’t do it all, but she did what she could. The result is that Dylan is a young man in his own right, walking with the swagger of someone 20 years his senior. Our mom made us both strong, and we embody her spirit. My mom taught us what it means to be human and what it takes to be a good one.
Lupus has given my mom the foresight to equip us for life, with or without her. She equips us with lessons daily, helps us handle life’s situations, and helps us truly live life well, instead of living one filled with worry. For that, I am beyond grateful.
“She equips us with lessons daily, helps us handle life’s situations, and helps us truly live life well, instead of living one filled with worry...“
A high-fat diet may accelerate the development of lupus, worsen lupus symptoms and increase markers of autoimmune disease in lupus-prone mice, according to new research.
A combination of genetic and environmental factors are thought to impact lupus risk and disease severity, and the role that diet may play in disease progression remains unclear.
In the study, researchers defined a high-fat diet as 60% of daily calories coming from fat and a regular diet as 10% of daily calories comprised of fat. Thirty male and thirty female lupus-prone mice were fed either a regular or high-fat diet for 14 weeks. Disease activity and oth-
er metrics were observed between the two groups. The researchers found that lupus-prone mice on a high-fat diet had faster progression and more severe disease.
Notably, skin lesions were observed in more than half (55.6%) of the mice who consumed more fat, whereas skin lesions occurred in 11.1% of mice on the regular diet. And though both males and females in the high-fat group showed some signs of accelerated and more severe disease activity, the male mice had higher blood levels of a few key biomarkers related to inflammation than the females. They also had worse kidney involvement. These findings corroborate previous evidence suggesting that males are more
likely to have more severe lupus symptoms, while females tend to have a broader range of symptoms.
More research is needed to understand how and why diet may affect lupus outcomes. Though there is no “lupus diet,” eating a nutritious, balanced diet is one important aspect of living well with lupus. Learn more about eating healthy when you have lupus.
Learn more about the connection between diet and lupus progression:
https://www.lupus.org/news/ study-examines-connectionbetween-diet-and-lupus-progression
Data from a post-hoc analysis of the Phase 3 clinical trial of Stelara® (ustekinumab) for treatment of people with moderate-to-severe lupus further validates the value of the Lupus Foundation of America’s REAL™ (Rapid Evaluation of Activity in Lupus). The instrument helps measure disease activity in people with lupus from both the physician’s and the patient’s perspectives. The ability to accurately measure lupus disease activity is challenging, yet critical in lupus research and to determine drug efficacy. Although the Stelara® trial did not meet its endpoint and was stopped early, the trial offered the opportunity to compare the LFA-REAL system with other lupus activity measures.
The LFA-REAL was evaluated in 516 study participants across the globe. The LFA-REAL showed moderate-strong correlations
with other commonly used tools that measure lupus disease activity, such as the Physician Global Assessment, British Isles Lupus Assessment Group Index, and the SLE Disease Activity Index. Disease activity was tracked over time and measured at baseline, week 24 and 52 of the trial.
“One of the goals of developing the LFA-REAL is to provide a simple, user-friendly system that can provide both an accurate global disease activity score and reliable individual organ scores from the physician and patient perspective,” shared Anca D. Askanase, MD, MPH, Lupus Foundation of America, Medical-Scientific Advisory Council member.
The LFA-REAL clinician-reported outcome (ClinRO) correlated well with active joint and skin disease measurement tools (Cutaneous
Lupus Erythematosus Disease Area and Severity Index). Additionally, ClinRO showed moderate correlation with LFA-REAL’s patient-reported outcome (PRO), suggesting that it could help more accurately capture the patients’ perspective on skin, muscle, joint, and bone lupus activity.
LFA-REAL’s ClinRO and PRO effectively evaluate lupus disease activity, and the researchers suggest further studies to understand similarities and differences between ClinRO and PRO conclusions. Learn more about the LFA-REAL lupus measurement tool.
Learn more about the LFA-REAL disease activity measurement tool for lupus:
https://www.lupus.org/news/ study-validates-lfareal-diseaseactivity-measurement-tool-for-lupusdisease-severity
The drug treatment, LUPKYNIS® (voclosporin), reduced inflammation and prevented development of kidney damage in people with lupus nephritis (LN, lupus-related kidney disease) over 18 months. Those taking the medication also didn’t exhibit any signs of kidney-related toxicity. LUPKYINS® is a novel, structurally modified calcineurin inhibitor (CNI) that works in two ways – acting as an immunosuppressant through inhibition of T-cell activation and cytokine production, and by promoting podocyte stability in the kidney. The AURORA Renal Biopsy SubStudy was conducted to further validate the therapy, which is already approved by the U.S. Food and Drug Administration. In the
study, select participants (26 total) underwent repeat biopsies over 18 months and their tissue samples were analyzed to assess disease activity levels, and measure inflammation and kidney damage. Compared to baseline, the activity scores for both LUPKYNIS and active control populations improved to a similar degree, while the chronicity scores remained stable over time in both arms.
Dr. Brad Rovin, Professor of Nephrology and Director, Division of Nephrology at the Ohio State University Wexner Medical Center and member of LFA Medical-Scientific Advisory Council said, “The lack of histologic evidence of CNI nephrotoxicity and the absence of pro
gression of chronic kidney damage after approximately 18 months of treatment further strengthen the overall evidence supporting the long-term safety of LUPKYNIS in LN patients.”
LN affects up to 60% of people with lupus. Continue to follow the Lupus Foundation of America for breaking news in lupus drug development, and learn more about LUPKYNIS.
Learn more about how Lupkynis® continues to show promising lupus nephritis outcomes:
https://www.lupus.org/news/ lupkynis-continues-to-showpromising-lupus-nephritis-outcomes
By Bizz Rinkes
I was able to stay in a medication-free “remission” of lupus for over 6 months, when my husband and I found out we were also pregnant. We were ELATED. I knew all the risks involved and possibilities, so we immediately called the doctor. Because I have lupus, we came in slightly sooner than most initial appointments to set up a plan. The plan was very much “dependent upon” the progress of the pregnancy, but it mostly only involved additional check-ups throughout. As long as we could both remain healthy, no further precautions were needed.
Because I had been working out at OrangeTheory Fitness prior to getting pregnant, my doctor actually encouraged me to continue, but listen to my body and take precautions with certain exercises. I had been used to listening to my body because of lupus and being sure to not push myself into a flare. The only symptoms I had were exhaustion (hello naps!) and morning sickness. I was working out at 5:15 am so when I was tired, but I wasn’t surprised. I made sure
to listen to my body and took naps after work as needed and rested all night. I actually slept in more often during my first trimester rather than workout, but I noticed a pattern that I would actually be more nauseous on those days!! I ended up losing 16 lbs during this time due to the morning sickness.
I started going to the gym more often in the morning and pushed through the initial nausea because by the time I was finished moving my body for an hour, no matter how easy I took it, I would feel better. I tried to limit the rest of my schedule to allow for naps or breaks so my body could recover. I was sure to tell our coaches so they could help me modify exercises and could help monitor my heart rate during class. I couldn’t believe it when I hit the second trimester and my energy started to come back. I felt stronger and faster than ever! I made sure I never ran on inclines and even if I felt like I could run my all-outs at 12mph, I didn’t. I listened to my gut that said “well what if you trip?” I didn’t want to take that kind of risk when
I had such a beautiful being growing inside.
I was lucky to be able to continue my workout regime throughout my pregnancy; and at every doctor’s appointment, I made sure to ask if I was still cleared to keep going to the gym. As I said, we had more appointments than is usual. At every appointment, the baby checked out healthy and so did I; so we were able to keep to our new routine. We had appointments with my regular ob-gyn and a high-risk ob-gyn doctor from the same hospital. I was referred to the high-risk doctor early on, but I didn’t have too much contact with her because of my overall healthy checks throughout my pregnancy.
She was always checking my chart to confirm that I was still within normal ranges. However, towards the end of my pregnancy, we did get to know the high-risk ob-gyn a bit better. We had at least one appointment a week from about 34 weeks on. Every other week we had a biophysical profile test (BPP), which is a combination of tests
that checks the baby’s health. It measures the baby’s body movement and muscle tone. It also measures how fast your baby’s heart rate accelerates during movement, and the amount of amniotic fluid protecting the baby in the womb. Each part of the test is assigned points, and basically the baby needed to get a total of 10 points in 30 minutes, which includes 2 points per category of movement - like legs, arms, etc. These movements were measured using an ultrasound. If the total is less than a certain number of points, then we would have to do more testing. We had an extremely active baby, and she never wanted to do her “practice breaths.”
At every BPP, the ultrasound tech would get all the movement points tracked in the first few minutes, and we would spend the last 25 minutes or so sitting and watching the baby’s lungs. The first time this happened, it made me very nervous. We were taken to a room where they set up multiple mon-
itors around my stomach. They charted movements and contractions for 30-60 minutes each time she “failed” her BPP. The baby luckily would do well during this “non-stress” test each time. After the second and third time of having to go through this, we started to catch on that this was just going to be our baby’s “normal.” We continued to go through the motions each time though to make sure everything still checked okay .
I ended up having to be induced because even at 39 weeks I was still running, squatting, and doing full workouts at the gym. Since lupus patients have high-risk deliveries after 40 weeks, and my due date was changed, my doctors didn’t want to take any chances. We started with pitocin, and it worked really well for my body. It immediately started the contractions, and we actually had to lower the dose at one point. We had a healthy baby girl the next morning. We were extremely thankful for both doctors who worked
together with both our daughter and my recovery.
Out of an abundance of caution, my doctors recommended I go back on Plaquenil after delivery. Hormones are completely thrown out of balance, and the doctors didn’t want negative effects. I also continued taking my prenatal vitamins. However, a few months later, I was able to wean off plaquenil because I was still symptom free. I was able to share a positive breastfeeding experience with our daughter and remain symptom free for almost 2 full years.
We count our blessings every day that we had such a positive experience with our daughter. We finally thought it was time to try for a sibling and a year later we are still waiting in anticipation. I’ve had flare ups off and on this entire time as well. I share this piece of my story because not only is each and everybody different (lupus or not), but so is each and every pregnancy journey. I also share this because as lupus patients, we are always warned of gloomy experiences, but I was happy to write an article to share with you all that it doesn’t have to be that way. At times, our journey requires resiliency (sometimes it feels like it is more resiliency than anything holding us together, right?), but our experience from the start of pregnancy was truly amazing and I finally felt “normal” in a sense. While I am now having symptoms, I’m lucky enough to have a supportive husband, family, and friends who can help when I need them . . . and, I’ve learned when to speak up when I do. I’m teaching my daughter that it’s ok to ask for help. I’m still able to show my daughter what it’s like to lead a healthy lifestyle. And, I’m experiencing things through her eyes. Becoming a mom has been the most exciting chapter of my life. I know as lupus patients we face many challenges, but I hope my story brings some light and hope to other lupus patients.
In this edition of My Lupus Living Room, Suzanne sits down with Kelly Perhach. Kelly shares all of the ups and downs of her lupus journey.
On this episode of My Lupus Living Room, Adrienne fills in for Suzanne and sits down with Dr Emily Littlejohn, DO, MPH from the Cleveland Clinic. Dr Littlejohn discusses all of the exciting new lupus research being conducted.
In episode 24, Suzanne sits down with Bev & Virgil at the LFA, GOC office. This wonderful couple shares their amazing journey and the lessons they learned along the way. Their story is a lesson in strength, love, and perseverance!
Our blog, Lupus Night Light, is a place where we share stories, and practical advice from patients that they have learned along their lupus journeys. You will find stories of triumph, hardship, and everything in between. It is meant to be a cathartic journey for both the contributors and readers alike.
Please do not lose hope, there is help! The Lupus Foundation of America, Greater Ohio Chapter knows how challenging it is, emotionally and mentally, to live with a chronic illness. This is why we have established a partnership with Signature Health to ensure that Ohio lupus patients have access to mental health support.
Who is Signature Health? Signature Health is non-profit, Federally Qualified Health Center providing health, addiction recovery, and primary care services to people across Ohio, via telehealth and in-person at locations in Ashtabula, Beachwood, Lakewood, Maple Heights, Painesville, and Willoughby. They have a team of experienced counselors, case managers, psychiatry providers, and nurses who work together to provide compassionate care.
The program will provide a 90-minute diagnostic evaluation to help determine the best mental health services for you. If you do not have a Medicaid or Medicare insurance plan that is accepted by Signature Health, the Lupus Foundation of America, Greater Ohio Chapter will cover the costs of the evaluation and two counseling sessions per month for a period of two months (while available funding lasts). Signature Health’s financial representatives also will be available to answer questions about covered benefits.
Get Started: Mental health matters, especially when dealing with a chronic illness. To take advantage of this program, please fill out the digital form.
Questions? Contact the Lupus Foundation of America, Greater Ohio Chapter at 1-888-NO-LUPUS or email Info@LupusGreaterOhio.org.
Do you need immediate help now? If this is a life-threatening emergency, please go to your nearest emergency room or dial 911. For non-emergency situations (domestic violence, food/shelter, etc.), dial 211 to speak to a live operator. If you are experiencing suicidal thoughts, call or text the National Suicide and Crisis Lifeline by dialing 988. You can also chat at 988-lifeline.org.
We are excited to announce the relaunch of the LFA, GOC mobile app! This new and improved version allows patients to track their medications, doctors, and symptoms as well as stay up to date with all of our programs and resources. We kept the design simple and user-friendly which allows users to easily access the information they desire. New features available with this update include:
The My Doctors feature allows patients to keep a central list of all of their doctors and their specialties. Patients can also choose to note their next appoint ment with each physician.
Lupians are typically on a wide range of medications which can be daunting to remember. The My Meds feature allows patients to store a list all of their medi cations for easy access. This will be useful when seeing physicians at different hospital systems or if a situa tion ever arises that a quickly referenced medication list is needed. Lupians may also choose to add dosage amount, frequency, and even refill dates to their list.
Journaling can be a useful tool for lupus patients because sometimes it is difficult to recall questions for your doctor or symptoms you are experiencing. Keeping a regular journal of tracking your symptoms, feelings, and your overall mood will come in handy at future doctor appointments.
Our largest fundraiser of the year! Register for the walk, track your fundraising progress, or sign up to volunteer - all within the app!
Some other features include a chapter events calendar, embedded podcast player, chapter resources we offer to patients, and access to our social media pages!
We are very excited to relaunch this useful tool to our constituents and cannot wait for you to try it! We appreciate any feedback, including things you would like to see added or anything you think is missing. You can download our app in the app store on your phone by searching LupusOH.
Have you had a seizure or convulsion?
Have you had unexplained confusion that lasted more than an hour?
Have you had unexplained fever higher than 100º F/38º C for more than a few days that was not due to infection?
Have you had sores in your mouth or nose that lasted more than five days?
Have you developed irritation or dryness in your eyes or mouth for more than a few weeks?
Have you had unexplained weight loss or abdominal pain or tenderness when your belly is touched?
Have you had a stroke or heart attack?
Have you felt chest pain while taking deep breaths? Kidneys
Have you been told you have protein in your urine?
Have you had swelling in your legs and ankles on both sides at the same time?
Have you been told you have anemia, low white cell count, or low platelet count?
Have your fingers and/or toes become pale or red or blue, or felt numb or painful?
Have you had blood clotting problems or a miscarriage?
If you have had any symptoms like these, especially if you have had several, talk to your doctor about lupus. Early diagnosis and proper medical care are the best ways to manage lupus.
Have you had stiff, tender, and swollen joints that feel worse in the morning?
Have you had extreme fatigue and weakness for days or weeks at a time, even after plenty of sleep?
Has your skin broken out after being in the sun, but it’s not a sunburn?
Have you had redness or rash across your nose and cheeks in the shape of a butterfly?
Have you had sores on your skin that would not heal?
Have you had sudden, unexplained hair loss?
Lupus is a chronic autoimmune disease that causes inflammation in various parts of the body. The disease can r a nge from mild to li f e - threatening. Ninety percent of those d i a g n osed with lupus are females between ages 15 and 44, but lupus also occurs in men, older people, and children. Lupus can be very hard to diagnose because symptoms vary from person to person, can come and go, and can mimic symptoms of other illnesses. is important to know the symptoms of lupus and to know if you are at risk for this disease. Here is a simple test to help you. Read each question and answer it in terms of your current AND past health. Please turn over this page for more information.
The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world’s cruelest 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. Contact the LFA or a chapter that serves your area to find out how you can become involved in our mission and how we can help you.
Leslie@lupusgreaterohio.org
I’m a registered nurse and have a BSN from Ohio University. My primary role is to help people understand lupus and provide general health education. I strive to build working relationships, solve problems and support patients while they learn how to best manage their symptoms. I started volunteering for the LFA, GOC over 20 years ago. My dedication is driven with a passion to help fight lupus and was inspired by all the people I have met along the way.
Suzanne@lupusgreaterohio.org
I have spent the last 30 years dedicated to the lupus patients in Ohio. The goal is to provide a better quality of life until a cause or cure for lupus is found. My passion is providing programs to empower those affected by lupus so that they will have a better journey with lupus through education and emotional support. Lupus does not have to be a lonely, miserable, and misunderstood illness. My goal is to provide my chapter with the tools and resources to provide such services to all those in the state of Ohio.
Mackenna@lupusgreaterohio.org
I’m the marketing manager and creative developer when it comes to strategizing new ideas for Lupus awareness. As a graduate from Bowling Green State University with a BFA in graphic design, I’ve always envisioned utilizing my skills to make a difference. My enthusiasm to help others through design has always been a passion of mine and having the opportunity to share and grow with the LFA, GOC team has been nothing but inspiring.
Kathy@lupusgreaterohio.org
I was diagnosed with lupus in 1989 and joined the Lupus Foundation of America, Greater Cleveland Chapter the same year. I have been able to grow with the organization, as it became the LFA, GOC. Knowing how important it was to have somewhere to turn when I was first diagnosed is what motivates me to do all I can to help our chapter continue in our mission. Being in remission for the past 20 years has enabled me to take an active part in the growth of our chapter.
Victoria@lupusgreaterohio.org
With a lifelong passion for service, I found the Nonprofit Administration program at Cleveland State was perfect for me. After obtaining my degree, I began working with the LFA,GOC. I was truly blessed to start my career learning from this brilliant team of skilled and passionate lupus advocates. After some time away from the Foundation, I am so happy to be back working on this mission. I can’t wait to connect with fellow supporters in the fight to end lupus, and I hope to see you at the next gathering of lupus warriors.
Aletha@lupusgreaterohio.org
I am the devoted mother of two wonderful sons, they are the reason I fight lupus daily. I share my story everyday hoping that it might help or encourage someone else on their journey. I try to leave lupus patients with these thoughts and that is keep your environment positive in all aspects and do what you can while
GOC team to help our chapter continue to grow and help lupus patients for years to come.
Rita@lupusgreaterohio.org
I am a caring, collaborative, and resourceful nursing professional with over 30 years of experience in a variety of roles. I have a BS in Biology and French from John Carroll University and a Doctor of Nursing degree from Frances Payne Bolton School of Nursing at Case Western Reserve University. I am passionate about giving effective and empathetic customer service and education to patients, caregivers, families, colleagues and community organizations. I am honored to be a part of the LFA,GOC and dedicated to providing education, support, and resources to lupus warriors.
THANK YOU FOR READING OHIO’S LUPUS MAGAZINE! FOR THE MOST UP-TO-DATE INFORMATION FROM THE WORLD OF LUPUS, PLEASE VISIT US AT WWW.LUPUSGREATEROHIO.ORG
THE FUNDING FOR THIS CAMPAIGN IS FROM AN EARMARK FROM THE STATE OF OHIO AND MANAGED BY THE OHIO DEPARTMENT OF HEALTH.
EMAIL INFO@LUPUSGREATEROHIO.ORG WITH ANY QUESTIONS OR CONCERNS.
Lupus Foundation of America, Greater Ohio Chapter
12930 Chippewa Road, Brecksville, OH, 44141
Phone: (440) 717-0183
Tollfree: 1 (888) NO-LUPUS
