Issue 2
Living
With Lupus
Dear Reader, I am compelled to share so much with you, I don’t even know where to begin. First and foremost, I want all my fellow lupians to know that together, with the rest of our lupus community, we are here for you. Although we have been working from a distance and we are all far apart, we have never been closer in the fight against lupus. This chapter has entered into a journey like no other. We have been at the forefront of the challenges being presented during these trying times. The staff has risen to needs within these uncharted waters and has made great progress in serving our lupus community. Many of you know that all of our in-person programs and events have been canceled. We scurried to find innovative ways to fill the needs of our lupus community. We have swiftly learned how to use many digital programs and platforms. We utilized the digital world to educate, support, advocate, and communicate. We do not know how long this new way of delivering our services will last. We are hopeful that you will utilize all of these new platforms. The hotline number, 1 (888) NO-LUPUS is still available, and we are here for you. Our free webinar lupus summits have reached outstanding participation numbers. We are hopeful that you join us for future digital summit events. Webinar support groups are in place and this is a great way for lupus patients and their families to continue to foster relationships and be supportive of each other. You do not need to feel isolated, please join us for our many programs and services. Revenue for the chapter has come to a screeching halt. This, of course, is quite troubling. Sustainability will be a challenge not only for this chapter but for many nonprofit organizations. Many will not be able to weather this storm. Since so many people are out of work and this chapter depends on donations and fundraising events (which were all canceled), things on the revenue front look grim. If you are able to give and if everyone gives something, we might be able to find the rainbow at the end of this storm. We do know that most of those who can give, have focused their giving to COVID and Black Lives Matter. Both are vital and especially important, and we are supportive of the need. Still, we will need to find a way to sustain so that we may continue to offer our programs and services in the future. Most recently, we have teamed up with the other LFA chapters and the National organization, all of whom share the same hurdles. Collectively, we are so excited to announce that we will have a virtual Walk to End Lupus Now® on October 10, 2020. For the first time ever, the nation will come together as a whole to fight lupus. These are waters that have not been traveled before. We know that the Walk to End Lupus Now® was a loved event by many. We felt that as a health organization it would not be prudent of us to encourage lupus patients, who have compromised immune systems, to participate in risky gatherings that could affect their health. Therefore, we are working together and asking our past walkers and supporters to walk their way. This could mean around your house, in a neighborhood park with your family, walk around your office, wherever it is that you and yours feel safe. I hope you join us! There is much more information about the Walk to End Lupus Now® inside this magazine. Your support is needed more today than ever before. We look forward to your participation and remain grateful for any and all support. A few years ago, the Lupus Foundation had a campaign called “Someone You Know Has Lupus”. Fast forward to 2020 and now we say, “Someone you know has COVID.” The numbers are staggering. Yes, some will not have a difficult time with the virus, but for others, it can do irreparable harm and possibly lead to death. Many of you know that I wear several hats in life: I am a mother, a wife, a daughter, a sister. I live with lupus every day (I have good days and bad days). I own a real estate brokerage, my family owns a restaurant, and I lead the Lupus Foundation of America, Greater Ohio Chapter as the CEO, and am on the
forefront of the war on lupus here in Ohio. I have a heavy heart worrying about things each day. I have had sleepless nights worrying about this crazy COVID world. I have spent countless hours reading and listening to many medical and government presentations on COVID. Just like many of you, my head is spinning. I have listened to the general population and many in the lupus community population. So, what do we do? Who do we listen to? Who do we trust? Where is my old life? When do we return to normal? Is there going to be a new normal? Who has the answers? Like you, we share a lot of questions and worries. These unprecedented times are unsettling. There is no doubt about it. Without a doubt, I am worrying about all of these things. Someone once said to me, “Do not worry. Worry is like paying interest on debt that might never come to fruition.” Someone else told me, “The Bible says, do not worry 365 times: once for each day of the year.” Here is what I do know: Worrying will make us sick! So, let us do what we always do. As lupians, we are accustomed to living with uncertainty. For many of us, our lupus journey has been similar to COVID. There are few answers, it is a cruel mystery, there is no known treatment, you cannot see it, and much work needs to be done. So, let us do what we can! This is a different leg of our journey. We all have a role in this new journey. What can we do to help? Individual responsibility is huge. Protect yourself first. How? Wash your hands, wear a mask, watch your space, stay at least six feet apart, watch where you go and who is surrounding you. If we each take on this individual responsibility, we will protect ourselves and others. These things we can do! Remember we do not know who the asymptomatic carriers are. You may not feel sick, but you could be a carrier. You could come into contact with someone vulnerable, like a sick child with cancer or asthma, or someone going through chemo. Unknowingly, you could pass the virus and cause irreparable harm. These types of vulnerable people could die. This could be your parents or someone you love. Do not be selfish. Think of those around you, this is called social responsibility. Science will come to our rescue; have faith in it. Many vaccines are on the horizon. There are many trials and as bleak as life appears, we will get back to normal. While we wait, we must be patient. Hope is on the horizon. Follow the data. Do not ignore the CDC. They do have the latest and most accurate data. Science will develop a solution. Do not listen or buy into crazy theories. America is restarting the economy after a lengthy shutdown. The effort to bring millions of people back to work brings lots of big, complicated questions and challenges. The role of the private sector is paramount. If we all pull together, we can champion this. Someone incredibly special shared this rhyme with me years ago. I have to share it with you. It speaks to how I feel. Please know I care about each of you and I am a phone call or email away. What can I give you to do my part? If I were a shepherd, I would bring a lamb. If I were a wise man, I would do my part. What can I give you? I give you my heart. You have a part. You do make a difference. There is no “I” in lupus but there is “US”! With hope for a brighter tomorrow,
Suzanne Tierney President & CEO Lupus Foundation of America, Greater Ohio Chapter
CONTENTS
Pg. 4 Patient Navigators and Support Groups Pg. 5-6 COVID-19 Pg. 7 Patient Stories Pg. 8 Keith Hudson Pg. 9-10 Janet Lockwood Pg. 11-12 Michael Davis-King Pg. 13-14 Get Involved Pg.15-17 Lupus Diet Pg. 18 Ask The Experts: HCQ Webinar Pg. 19 Summits Go Virtual Pg. 20 Research Pg. 21-22 In Memoriam Pg. 23-24 Other Ways to Give Pg. 25-26 Virtual Walk to End Lupus Now® Pg. 27-29 Lisa Fleming Pg. 30 Staff
**Funded by the Ohio Commission on Minority Health
The funding for this magazine is from an earmark from the State of Ohio and managed by the Ohio Department of Health.
Local Patient Navigators are Available for Email Inquiries President & CEO, Suzanne@LupusGreaterOhio.org Vice President & Registered Nurse, Leslie@LupusGreaterOhio.org Greater Cleveland Community Outreach Coordinator, Aletha@LupusGreaterOhio.org
What is a Patient Navigator? A Patient Navigator is a trained individual who serves as a local go-to person for support in your lupus journey. They can help you find resources and navigate the challenges of living with lupus. If you would like to connect with your Patient Navigator, please contact the office or email them directly.
Due to the COVID-19 pandemic, our support groups have gone digital. For the most up-to-date program schedule, please visit: lupus.org/ohio/eventscalendar
Northeast Ohio NEOH@LupusGreaterOhio.org Eastern Ohio EasternOH@LupusGreaterOhio.org Western Ohio WesternOH@LupusGreaterOhio.org Central Ohio Columbus@LupusGreaterOhio.org Kettering@LupusGreaterOhio.org Southwest Ohio Cincinnati@LupusGreaterOhio.org
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LUPUS & COVID
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“In these uncertain times...”
The phrase is woven into everyday conversations, press conferences, commercials, emails, and the list goes on and on. Yet, as played out as it may seem, it highlights one of the scariest and most difficult parts of the pandemic: uncertainty. When will this be over? How do I protect myself and others? What information can I trust? What will the world look like a year from now? People who have lupus are no strangers to uncertainty. So, while the pandemic may present new challenges, the lessons and grace you’ve gained from living with lupus can be applied to the pandemic too. We all have so many questions and worries, for now, we can focus on what we do know and what we can do.
Immunocompromised
Lupus can be described as an overactive immune system that attacks healthy tissue. So, lupus can make the immune system less effective at fighting infections because it’s too busy attacking the rest of the body. In addition to lupus itself, immunosuppressant drugs that are often used to treat lupus can make the immune system less able to fight infections. The CDC recommends that people with compromised immune systems take extra precautions to prevent contracting COVID-19.
HCQ
Keep Your Distance
Yes, You Should Wear a Mask
Mental Health
Hydroxychloroquine (HCQ), also known as Plaquenil, has been a hot topic following claims that it was a possible COVID-19 treatment. However, the FDA ended its Emergency Use Authorization of HCQ in June after there was no substantial evidence that HCQ was a preventative, treatment, or cure for COVID-19. Whether you’re on HCQ or not, there is currently no evidence that people with lupus are immune to COVID-19.
The CDC recommends that people wear cloth face coverings when they are in public places where it is difficult to stay six feet away from other people. An asymptomatic person infected with the coronavirus can transmit the virus to other people without even knowing it. Numerous studies have shown that wearing a mask (that’s right, even the cloth ones) can slow the spread of the virus. Many cities in Ohio are now mandating face masks when in public.
If you’ve always said you were a homebody, now is your time to shine. Staying home as much as possible and staying at least six feet from people outside of your household is crucial in slowing the spread of COVID-19. Masks can help, but mostly because they decrease the chance of you infecting others. Since you can’t control whether the people around you will wear one to protect you, it’s important to limit your exposure by social distancing. Living with a chronic illness has its own challenges, but adding on the stressors of the pandemic can take an even greater toll on your mental health. Try to maintain any mental health treatments you had before COVID-19, make sure you’re practicing self care, and continue to connect with friends via digital channels and social distancing (going for a walk six feet apart, for example). The never-ending news cycle and social distancing can be difficult to deal with, but remember that the same technology that can cause worry can also connect us with loved ones, reliable information, and vital resources. If you’re struggling right now, know that there are telemedicine options to help you cope. If you need immediate help, please call 1-800-273-8255 for the National Suicide Prevention Hotline. Visit our COVID-19 and lupus page for more information and resources for Ohioans. We also recommend you visit the CDC COVID-19 page and the Ohio Department of Health’s COVID-19 page for the latest updates. lupus.org/ohio/coronavirus-lupus
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PATIENT STORIES
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Keith Hudson I was officially diagnosed with lupus in January 2016 after struggling for three years prior with always feeling fatigued and my joints being stiff. The nurse practitioner at my sleep doctor’s practice suspected I might have lupus in 2015 and ordered an antinuclear antibody (ANA) test which came back positive that I might have the disease. Currently, I take several medications for my condition including methotrexate, hydroxychloroquine, and a monthly IV infusion of the biologic Benlysta. The
most difficult part of lupus is never knowing when you might have a flare-up and overdoing it on a day when you feel like your old self. I have found the Lupus Foundation of America, Greater Ohio Chapter to be an excellent resource for information as well as support. With a chronic health condition, it’s been inspiring to me to hear how others cope with the disease and how we can each encourage one another, especially on our worst days.
My counselor always tells me that “I am stronger than I think” and I would also offer those words to each of you as well on this lupus journey, whether you have been recently diagnosed or have been dealing with the condition for a long time. We are very fortunate to have a wonderful resource to reach out to and I would encourage you (and myself ) to reach out when you need support whenever you might need it.
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Janet Lockwood C’est la vie, c’est la guerre. It is a French saying, “such is life, such is war.” For me, it was a war to get to live life; I chose life. About 13 years ago I was diagnosed with Sjogren’s. No big deal. It was just something I had to live with. I didn’t even read or learn much about it. I knew I was extremely tired! I started acupuncture to help with the tiredness. After about six months of acupuncture, I noticed every needle hole had a severe bruise, which was very concerning. The doctor did some blood work. My ANA had turned on and my platelets were critically low. She immediately told me to go to a hematologist. She also repeated the bloodwork and my platelets had dropped even lower. I went to the hematologist and very quickly ruled out leukemia. It was painful, but my husband held my hand during the whole procedure. Thankfully, the results were negative. After even more blood tests, the platelets continued to drop. The hematologist told me not to get hurt or else I would die. In the meantime, I saw a rheumatologist who specialized in lupus. The doctor was very cold and told me to ‘do exactly as I say.’ So I started Plaquenil and felt awful on it. I went back to the rheumatolo9
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gist and told him that I wasn’t feeling well on the Plaquenil. He told me he was the specialist and that he knew it was the only thing that could help me and that I’d better listen. Ok? That took about 5 minutes. I walked out and told myself there had to be more information out there. During this time my heart was heavy. I didn’t know anything but pure fear every day. I had to tell my children and my best friend. That’s when I had to talk out loud about lupus. It was very loud in my head; I didn’t know many answers. Even with the best support in the world, it was hard not to think about each doctor’s words of doom. At this point, I still had to deal with my platelets. The hematologist decided on a treatment of IgG, which did not work at all. My numbers went down even further. He said, “I do not know how you’re still working full-time.” I finally had a name for what was happening: ITP (idiopathic thrombocytopenic purpura) as a result of my lupus. In layman’s terms, my immune system was destroying my platelets. So, early in 2011, I started on rituximab. It was my last hope. It was very painful in the beginning and this pain continued for over a year. Eventually, my numbers did level off and then started to bounce back. All of this was a come to Jesus moment. I needed to answer the question, ‘How do I want to live?’ Every day I was afraid to wake up. I knew it would be excruciating to take any step. I could not sit for a long time, walk very far, or even stand in one place.
Any movement was a process to consider. I did not want to miss anything. I asked myself, ‘Where do I go from here?’ This disease consumed every ounce of me. I knew that there was more to learn. During all of this, I tried to learn to give myself permission to just let go of what I couldn’t get done. As I sat by myself amidst the confusion in the air, I realized that I was the same person I was yesterday, with just a few modifications! I realized that I could live with that. The air was not as heavy when I made this realization and took a deep breath. I finally understood the fear. It was life-altering but I knew I was alive. I soon turned to companion medicine. I educated myself and learned what each of the blood tests were. I tried many different things, and it was a lot! The lifestyle was number one. When I was tired, I had to stop, no matter what. I had to change my food intake. Many foods caused inflammation in my body. It hurt more when I ate those particular foods. I could not exercise the same. It had to be in smaller doses. So I learned a great deal. But the biggest thing I realized was that I could still live and laugh! Throughout it all, my family held my hand for each moment. My husband was grateful I was alive. I knew people did not know I had this disease and that was ok. I could not let it define me. I defined my lupus journey, not the illness. Today, I enjoy time with my family in my Jeep. Lupus colors and all. My husband picked them out for me!
Michael Davis-King “I HAD INITIALLY GONE TO THE DOCTOR TO GET WHAT I HAD THOUGHT WAS A SUNBURN LOOKED AT.” - MICHAEL DAVIS-KING That was back in May 2016 when Michael Davis-King found out that he had lupus. Since then, he has gone on to become a successful student at Ohio University, an avid gamer, and an aspiring writer—all while keeping an optimistic outlook. “I consider myself pretty lucky for having such a mild case of lupus. It has made me a lot more understanding of other individuals’ struggles as if I hadn’t found out that I had lupus as early as I did; I could have been in a lot worse condition than I am now,” said Davis-King. “I have been told by my girlfriend’s mother that I am the healthiest sick person that she knows,” he said. Although Michael’s case is not severe and he remains upbeat, lupus is still an undeniable part of his life. From the frustration of switching doctors to the dayto-day toll, living with a chronic invisible illness can be difficult.
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“I think that being young has given me a bit of an edge in regards to the symptoms, but it still comes with its fair amount of challenges outside of that. My symptoms are not always at the forefront of my organic presentation. Things like getting tired, lingering colds, or having a hard time retaining information are not always going to be things that everyone can understand,” said Davis-King. Despite the difficulties, Michael continues to excel and enjoys his life at OU. Not only is he a student manager at a dining hall, but he also made the dean’s list as a classical languages major (which is not exactly a cakewalk). The support of his professors and the university have helped make college a positive experience. “Ohio University really puts in the effort to make sure I can get help should I ever need it, and the professors I have in my cur-
rent major are some of the kindest that I have ever met. Learning Latin and Ancient Greek at the same time might rock the boat a bit this semester, but we’ll see,” he said. Along with a solid support system at school, Michael also has coping mechanisms that could best be described as those of a modern renaissance man. “I have taken up writing as an
Share Your Story When you share your story, you are letting thousands of people across the state know that they are not alone. Every day, we’re working to raise awareness of the challenges and accomplishments of people living with lupus. If you would like to share your experience as a lupus patient or caregiver, please contact our office.
enjoyable pastime, and I’m hesitant to say that I’m getting a bit good at it,” sad Davis-King. “I recently reached fifty-seven pages, and I am very happy when I take time out of the day to do some writing or world-building. I think that it has been a good way to de-stress while still keeping an active mind. I also still have video games as a pastime, however, sometimes they are not the most relaxing. Of course, there is always the ability to just hang out with friends. Be it in-person or the currently more common online. I have also taken a few plants under my guidance, my favorite being a Mexican Lime tree. It refuses to
grow any limes, though I remain hopeful,” he said. Whether it’s a stubborn lime tree, taking care of an abandoned kitten during the pandemic, or lupus, remaining hopeful seems to be Michael’s strong suit. While he says he is fairly young and “wanting for life experience,” he does have some major takeaways from his experience with lupus. “I think that the most important thing to carry with you is a lot of patience. That and don’t be afraid to be a little out there, embrace the strange creative side every once in a while, and
toss some lighthearted fun into those serious conversations. I find that it makes visits to the doctor a lot more palatable,” said Davis-King. “Don’t stress out about anything. Stress is something I have to manage with lupus, and honestly, it was easier to just throw out worrying. As long as things are getting done when they need to get done, everything will be fine. There have been so many things that I worried about for nothing, especially when it came to lupus. Whatever happens, happens, it’s way easier to just roll with it.”
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GET INVOLVED Email Sign-Up
Become a Member
Host a Third-Party Event
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: lupus.org/ohio/get-involved
One-year: $25 Lifetime: $200 lupus.org/ohio/ become-a-member
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.
Text Message Notifications Text “NOLUPUS” to 833-4490800, complete your contact information, and be sure to optin to receive important lupus updates directly to your mobile device.
Get Social
Your membership helps us continue to: •
Respond to over 20,000 calls a year on our information line.
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Provide lupus support groups, educational programs, and a physician directory.
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Support research promotes lupus awareness, and advocates for patients and funding.
If you are interested in hosting a third-party event, reach out to us for our official guidelines. Then, submit your application and wait to be contacted by an LFA, GOC staff member.
Join us on our social media plat-
forms to stay connected: lupus.org/ohio/get-social
Thank You
to Our Current Members! 13
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Become an Advocate and Make Your Voice Heard If you are passionate about making a difference in the lives of lupus patients and want to make an impact by using your voice, please consider volunteering to be an advocate! Advocates help the LFA, GOC by standing up for topics of importance in the lupus community such as step-therapy, research, and affordable healthcare. Advocates make a difference every day by supporting those impacted by lupus until we find a cure. Advocacy takes many forms. When the LFA, GOC puts out a “call to action” you can respond by writing letters and calling your legislators. You can post “mission critical” messages on your social media platforms. You can even join LFA, GOC staff at the Ohio statehouse to
meet with senators and representatives about lupus funding and other important initiatives. Whatever your level of comfort, remember that we need a collective voice to ensure that lupus remains a priority in the state of Ohio. We must stay in front of our legislators to ensure they KNOW Lupus. Help us by signing up today to be a lupus advocate. We Need Your Help in January First and foremost, we all must do our part as Americans by voting and completing the 2020 census. Second, we need to get in front of our local lawmakers to ensure that they hear our voices. We must make our state representatives aware of the struggles that you fight every day. If we do not voice our needs, our voices will not be heard. Join the
chapter in educating our state decision-makers to secure a better future for us all. In years past, we have broken up into teams and made appointments with the State House of Representatives and the Senate. This year will be a little different. We are working on ways to meet with our representatives safely. There are plans to schedule virtual meetings in January 2021. Stay tuned for details on how you can do your part and talk to your local representatives. Visit our website to stay informed on advocacy information. lupus.org/ohio/lupusadvocate.
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FIGHTING INFLAMMATION WITH FOOD GRETCHEN SPETZ, MS, RDN, LD Can you remember the last time you got a cut, were stung by a bee, or injured a joint? Your body reacted in a way to heal itself, and returned the injured tissue to a normal state. That pain, redness, and/or swelling is the result of a protective response called inflammation. Inflammation is necessary and is not bad, but it is optimally a short-term response to fix a problem in the body. If we didn’t have an immune response, the body would not fix itself! However, when inflammation becomes chronic as it does when you have lupus, extinguishing some of the inflammation can have big health benefits. There are often tell-tale signs that your body is dealing with chronic inflammation before a specific diagnosis. Symptoms include elevated blood sugar levels, gut issues, an increase in visceral fat, fatigue, skin issues, gingivitis, swelling, and brain fog. When you have lupus, the immune system is over-activated and begins to attack healthy tissue in any organ system. Lupus most commonly affects the skin, joints, kidneys, and heart.
GET THE RIGHT AMOUNT OF CALORIES: Eating a diet that provides you with the proper amount of calories is important. If you need to lose weight, working with a Registered Dietitian Nutritionist can help you determine the number of calories that will provide adequate nutrients while also helping you lose weight and slow the progression of lupus. Mice studies show that a lower calorie diet reduces the abnormal increase of immune cells, delays the onset of kidney disease, and prolongs the lifespan in older mice. These may be mice studies, but they are applicable to humans too! We know that obesity contributes to increased chronic inflammation, so achieving and maintaining a healthy weight is beneficial to reducing inflammation.
INCREASE YOUR FIBER INTAKE:
An anti-inflammatory diet is a low-risk, natural approach to reducing chronic inflammation. When you have lupus, an anti-inflammatory diet can complement your medication in reducing the severity of symptoms, and it may help you reduce the amount of medication you take. What is an anti-inflammatory diet? An anti-inflammatory diet is described in research as a calorie-appropriate diet that is low in processed carbohydrates, high in fiber, high in mono and polyunsaturated fats (plant-based fats), higher in omega-3 fatty acids than omega-6 fatty acids, and high in antioxidants. Translation: an anti-inflammatory diet is high in minimally-processed or unprocessed plant food with a focus on healthy fats and moderate animal protein intake. 15
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Whole carbohydrates such as vegetables, fruits, beans/legumes, nuts, seeds, and whole grains are an excellent source of fiber. Fiber is essential for slowing down digestion, clearing toxins, and feeding your gut microbiome. Taking in at least 25 grams of fiber per day is a great tool to manage blood sugar levels, help you stay full after meals, and promote gut health and regular bowel movements. Fiber-rich foods also contain many vitamins, minerals, and antioxidants that help to lower chronic inflammation. Limiting easily digestible carbohydrates like cookies, chips, crackers, and other foods made with white flour is an important part of an anti-inflammatory diet.
WHAT ABOUT GLUTEN? It is estimated that at least 30% of the population has some degree of gluten sensitivity. Gluten is a protein that is part of wheat. There is nothing inherently wrong with gluten, but due to elevated gluten exposure in recent decades through processed foods and large-scale farming practices like pesticide and GMO seed use, people with autoimmune disease may be more sensitive to gluten. Eliminating gluten for four weeks and reintroducing it back into the diet can help you determine if gluten consumption exacerbates your symptoms.
FOCUS ON PLANT-BASED FATS AND OMEGA-3 FATTY ACIDS Choosing plant-based fats that are rich in mono and polyunsaturated fatty acids are an important part of an anti-inflammatory diet. Plantbased fats can help improve your lipid profile. They also contain vitamins and antioxidants that lower inflammation. In order to get the right amount of fat in your diet, think about fat as a condiment that you add to every meal. Excellent sources of plantbased fats include olives, avocado, nuts, and seeds. At home, I recommend using extra virgin olive oil and avocado oil as your two main cooking oils. Omega-3 fatty acids are the primary anti-inflammatory fatty acid.
EAT THE RAINBOW
In the US, most people have more omega-6 fatty acids (pro-inflammatory fatty acids) than omega-3 fatty acids. Cold water fish like tuna, sardines, and salmon are excellent sources of omega-3 fatty acids. Consider including wild-caught fish rich in omega-3 in your diet two or three times per week. Saturated fats (fats from animal sources) can contribute to an elevated risk for cardiovascular disease. Eating lean cuts of meat and limiting animal fat intake is part of an anti-inflammatory diet.
Antioxidants found in fruit and vegetables are crucial for reducing chronic inflammation. Produce intake will vary from person to person, but generally speaking, eating one to two servings of fruit and filling half of a lunch and dinner plate with veggies is an excellent strategy to get in needed antioxidants. The color and variety of your fruits and vegetables is important too! If you find that you only eat broccoli and green beans, be mindful about mixing in fruit and veggies of other colors. Broccoli, red onions, berries, and coffee (in moderation!) are excellent sources of polyphenols. This antioxidant is particularly beneficial for gut health and cognition.
MAKE IT HAPPEN BY FOLLOWING THE PLATE HOW DO WE PUT ALL OF THIS TOGETHER? AN EASY WAY TO ACCOMPLISH THIS IS TO FOLLOW THE HEALTHY EATING PLATE. THE HEALTHY EATING PLATE MODEL WAS DEVELOPED AT THE HARVARD T.H. CHAN SCHOOL OF PUBLIC HEALTH. THE PLATE LOOKS LIKE THIS:
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½ plate veggies (1 serving of fruit optional) ¼ plate protein ½ plate complex carbohydrates (whole grains, starchy vegetables, beans/legumes) Plant-based fat as a condiment Water as your main beverage
ASK THE EXPERTS
Hydroxychloroquine Facts vs Fiction The use of hydroxychloroquine • (HCQ), brand name: Plaquenil, as a COVID-19 treatment was recently a “hot topic” in the news. On Tuesday, June 2, all of the chapters of the Lupus Foundation of America (LFA) came together virtually to dispel rumors and focus on what is truly known about HCQ. Vice • President of the LFA’s Greater Ohio Chapter, Leslie Tierney, RN, went live with Dr. David Batt of IU Health Physicians Rheumatology to provide an overview and answer questions as they relate to HCQ and lupus. Read on for a few key takeaways from this presentation. •
How lupus presents itself varies greatly among indi- • viduals, so every patient’s need for medications differs. That being said, Dr. Batt feels that if there is no reason for a lupus patient to not be taking HCQ (i.e. a bad reaction, interference with other meds, insurance issues, etc.) then they should be on it.
at 200mg a day if they are under 135lbs, or 400mg if over that weight. On top of the higher dose, the HCQ was given along with azithromycin, brand name: Zithromax, which may have caused side effects on its own, such as the arrhythmias observed in the studies.
HCQ effects on COVID-19 studies were first conducted in test tubes. This controlled environment may have given promising results, but further testing was required. The final research found that HCQ does not prevent COVID-19. If a COVID-19 patient were already sick enough to be, or nearly need to be, on a ventilator, taking HCQ actually made them worse. However, being on HCQ does not make you more susceptible to catching COVID-19 and if someone on the medication did catch the virus, it would likely not make someone sicker. HCQ had poor effects in COVID-19 studies, but Dr. Batt believes that is because the virus patients were treated with higher than usual dosages. For comparison, someone with COVID-19 would initially be prescribed HCQ at 800mg, then be reduced to 600mg. Generally, a person without COVID-19 is prescribed HCQ
•
If one takes HCQ medication, then there is an increased risk of retinal toxicity. This is something doctors monitor regularly in those who are prescribed HCQ. If it does occur, Dr. Batt confidently stated that it is usually caught early enough to prevent further damage.
Overall, Dr. Batt cleared up much confusion regarding one of the leading lupus drugs on the market while stressing that the facts shared by medical professionals should always be trusted over the opinions of politicians. Watch the full recording here:
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Lupus Educational Summits Go Virtual! The annual lupus summits are designed to gather the community and learn from our local lupus experts. In the past five years, the chapter has been focused on providing statewide in-person educational gatherings. The Lupus Foundation of America, Greater Ohio Chapter, Inc. (LFA, GOC) hosts eight in-person summits annually to unite the lupus community. The focus of the summits are to improve public, patient, and professional awareness and understanding of lupus and its health effects. In addition, the summits help the community to understand that the Lupus Foundation of America is the driving force behind increasing public and private investment in lupus research and the development of safer and more targeted therapies. Each year, the LFA, GOC partners with area hospitals to network with lupus experts and provide the most up-to-date accurate information on lupus. Before COVID-19 altered the world, the lupus summits were a gathering of familiar faces and a chance to gain valuable lupus information and connect with friends and others who were impacted by lupus. During the early days of the pandemic, the LFA, GOC staff faced many challenges and made the tough decision to cancel and/ or postpone all in-person events for the remainder of the year. Our small but mighty chapter had to buckle down and figure out how to continue the mission and provide services to all of Ohio. The decision was made to hold the remaining lupus summits digitally. This solution ensured that the lupus community 19
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Thank you to our Part 1 Speakers
still had access to vital lupus educational information, while being mindful that social distancing was a number one priority for the community. With the help of the Ohio Department of Health and GSK/Us in Lupus, we were able to create a virtual meeting room to gather everyone statewide. We are so thankful that we were able to secure state funding and a sponsorship to provide the needed education our constituents look forward to and depend on. The chapter coordinated partnerships with University Hospital of Cleveland and The Ohio State University Wexner Medical Center in Columbus to organize the first-ever Virtual Lupus Summits. We had great success with gathering over 375 participants and we sent out 400 personal protection equipment kits to all that attended. We feel it was a huge success in finding a way to stay connected. We are hopeful that we can gather again in person soon. In the meanwhile, we hope that you will continue to join us on our digital lupus journey. To stay informed you can watch the recordings of the Summits (Part One and Two) on the chapter website. Visit Lupus.org/ohio/educationalprograms to stay connected.
Dr. Blumenthal
Dr. Warren
Cindy Fiske, BSN
Dr. Malakooti Thank you to our Part 2 Speakers
Dr. Ardoin
Dr. Kenol
Cindy Fiske, BSN
House Committee Advances Funding for Lupus Programs News July 13, 2020
Moments ago, the Committee on Appropriations in the U.S. House of Representatives passed their fiscal year 2021 Labor, Health and Human Services, and Education (LHHS) appropriations bill. The legislation includes funding for several programs and agencies critical to lupus research and education, including: •
$8.5 million for the National Lupus Patient Registry at the Centers for Disease Control and Prevention (CDC);
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$2 million for the Lupus Program at the Office of Minority Health.
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$47 billion for the National Institutes of Health, the largest public funder of lupus research in the world, an increase of more than $5 billion over 2020.
If enacted into law, this legislation would bring total funding for the National Lupus Patient Registry to more than $80 million since the Foundation and lupus advocates led efforts to establish the program at the CDC in 2003. Since then, the Registry has funded research into every aspect of lupus, and advanced our understanding about who gets lupus and how it affects them, the natural history of the disease, and the burden of treatment on people living with lupus.
Trial Program (Lupus Program) to be used to launch a new multi-year grant cycle with the goals to “reduce lupus-related health disparities among racial and ethnic minority populations disproportionately affected by lupus and also to increase minority participation in lupus-related clinical trials.” The program has received nearly $17 million in federal funding since 2009 to continue its vitally important work. We are grateful to our champions in the Congressional Lupus Caucus who lead our fight on Capitol Hill. We’re especially thankful to the Caucus Co-chairs, Representatives Bill Keating (D-MA), Eddie Bernice Johnson (D-TX) and Peter King (R-NY), as well as the Appropriations Committee Chairwoman Nita Lowey (D-NY) and Ranking Member Kay Granger (R-TX).
an opportunity to raise their voice in support of policies and programs like these that are critical to our shared fight against lupus. The passion and commitment of lupus advocates plays a tremendous role in all of our victories, and we are honored to be your partners in this fight.
Next Steps The Committee’s LHHS bill now moves to the full House of Representatives for consideration later this month. Additionally, tomorrow the Committee is expected to advance its fiscal year 2021 Department of Defense funding bill, which includes $10 million for the Lupus Research Program. The Senate Committee on Appropriations has yet to begin working on its version of either bill.
Most importantly, we are thankful to our nationwide network of lupus advocates who never miss
The passion and commitment of lupus advocates plays a tremendous role in all of our victories, and we are honored to be your partners in this fight.
The legislation also directs $2 million to the Office of Minority Health and their National Lupus Training, Outreach, and Clinical LIVING WITH LUPUS MAGAZINE
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IN MEMORIAM LEAVE A LASTING LEGACY 21
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A charitable gift from your estate can leave a lasting impact of hope and much-needed support for lupus patients. A bequest is a type of charitable gift where items of value (assets) from an estate such as stocks, bonds, property, cash, jewelry, etc. are given to an individual or organization through a will or estate. Bequests can be made to charities such as the Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC).
Marc Jay Golland 1949-2019
Over the past few years, the LFA, GOC was incredibly fortunate to receive two bequests. Marc Jay Golland and Juanita Byrnes both recognized us in their estate plans. The LFA, GOC is tremendously thankful for their forethought, generosity, and the legacy made by their charitable gifts. May they both rest in eternal peace. A bequest makes a real difference and can also be beneficial in terms of tax advantages. If you are curious about charitable giving and estate planning, please contact your financial manager or attorney. Ask how you can make a difference in the lives of lupus patients by making a bequest to the LFA, GOC. Again, the LFA, GOC is so thankful to Mr. Golland and Ms. Byrnes whose legacy now lives on the lives of lupus patients. Our mission would not be possible without their generosity.
Juanita (Nita) Byrnes 1926-2017
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OTHER WAYS TO GIVE We know that COVID-19 has impacted so many people financially, and we completely understand if you are unable to give at this time. However, for those who can, we greatly appreciate all gifts as our organization weathers this storm. We can’t thank you all enough for your continued support. From record-high Facebook fundraiser contributions to monumental gifts through bequests, you have proven one thing: No matter the circumstances, the Ohio lupus community will keep pushing the mission forward until there is a cure!
Traditional
Checks - You can make checks payable to the Lupus Foundation of America Greater Ohio Chapter, and mail them directly to Lupus Foundation of America, Greater Ohio Chapter, 12930 Chippewa Road, Cleveland, Ohio 44141. Credit Card + PayPal - Fill out the online donation form to pay with a credit card and check for employer-matching gifts.
Social Media
Facebook Fundraiser - Facebook birthday fundraisers are an easy way to use your platform for a good cause! Instagram Stories - Did you know that you can put an LFA, GOC donation sticker on your Instagram story? Adding this button to your story creates a mini-fundraiser in which your followers can donate quickly.
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Through Your Job
Employer Matching Gifts - Many employers match contributions made by their employees to qualifying charitable organizations. Ask your employer for matching gift forms, send the completed forms to us with your gift, and we’ll fill in the verification information. Combined Federal Campaign - If you’re a federal employee, you can donate through the CFC using the agency #51890. Community Health Charities - If your employer participates in the Community Health Charities campaign, please check the number #9963 code to designate a gift to us. United Way Campaigns - Check your local campaign for more information on donor choice programs.
In Honor Of...
You may make a gift to the LFA, GOC in memory or honor of a loved one. Visit our website to download the form for this option. You can include the LFA, GOC in your will to support the mission beyond your lifetime. Visit our website for more information on leaving a bequest to the LFA, GOC. Give the gift of life insurance by naming the LFA, GOC as a sole or partial beneficiary.
Investing
Stock or Other Securities - Donating stock or other appreciated securities to the LFA, GOC has three important benefits for you: For most gifts, the charitable deduction is the fair market value of the securities at the time of transfer. You avoid capital gains taxes. You pay no brokerage fees or sales commissions. Visit our website for instructions on making a gift using appreciated securities. Life Income Plans Pooled Income Fund - Similar to a mutual fund, this combines gifts from many donors for investment purposes and pays earnings to donors based on the number of units their gift represents. Charitable Remainder Trusts Donors can increase the return on their investment while maintaining control over their assets by establishing a Charitable Remainder Trust.
Other
Amazon Smile - Whether you’re stocking up on essentials or just enjoying some retail therapy, use smile.amazon.com and choose the LFA, GOC to donate 5% of your order price to us. Donatestuff.com - If you’re using this time at home to tidy up, Donatestuff.com is here to help. Schedule a donation pickup of your gently used goods and pick the LFA, GOC as your charity. They’ll make a monetary donation for every donation of your used goods. It’s a win-win! For more information on ways to give, please visit lupus.org/ohio/ways-to-donate or contact the office with any questions. Many of these giving options have benefits for you and are tax deductible.
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On 10.10.20 Ohio Joins the Nation as we Take the Walk to End Lupus NowÂŽ Virtual! Join us on October 10 as we come together from coast to coast for a virtual walk event unlike any other. This is your opportunity to work together for one purpose: ending lupus. Join the Lupus Foundation of America, Greater Ohio Chapter, and thousands of virtual walkers from across the country to raise money for research, increase awareness, and rally support for the estimated 1.5 million Americans living with lupus. Together, we are POWERFUL. No matter where you walk, we walk as one.
REGISTER NOW How it Works Register. Fundraise. Raise funds for lupus research, support, and education while earning awesome incentives along the way. Spread the Word. Invite friends, family, and coworkers to join your team and fundraise! Participate. Join us on October 10 as we unite as one lupus community for a unique virtual event. Walk! Lace-up your shoes and walk wherever you are, as we take steps towards a cure! This new experience will keep us together safely while we are apart due to the COVID-19 pandemic. Every step and every dollar raised brings us one step closer to a cure.
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Walk to End Lupus Now®
is our biggest fundraiser of the year and we need your support now more than ever. Without your help, our chapter cannot continue our services, contributions to research, advocacy, and so much more. The widespread financial impact of the pandemic, as well as canceling in-person events, have made our revenue come to a screeching halt. But we will not let COVID-19 hold us back from the important work that we’re doing. In a time where it’s easy to feel helpless, know that you still have the power to make a difference!
Thank You to Our Sponsors!
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Interview with Lisa Fleming 300 R.Y.T., Reiki Master who has been teaching yoga and meditation for over 10 years. As interviewed by Amber Bills.
A: How did you get into meditation? Where were you in your lupus journey at the time? L: In 2008 I left an unhealthy marriage and was down to 88 pounds. I was very sick with heartache, lack of nutrition, prescription drug-induced sleep, and anti-anxiety medication. I was on-again, off-again suicidal, and was lost. A new friend told me I was going to yoga with her, and I gave in. It was in that first class that I felt something I never had felt before. During meditation, I felt connected to myself at a deep soul level. I felt more connected to God than I ever had in church. Within 3 months of beginning my 2-3 day a week practice, I went back into remission, began to eat and exercise again, and was able to stop taking my antidepressants and anti-anxiety medications. I fell in LOVE with meditation (and yoga) that very first time, and I credit it for the remission and the strength to get through my divorce. A: Does meditation only address the mental health effects of lupus, or is it intended to help with physical symptoms too? L: Meditation absolutely comforts all levels of our being; our physical, mental, emotional, and energetic systems. The basis of meditation is to come to stillness in the physical body
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and tune into awareness of the whole self, including what’s happening around us. While you meditate, the physical body gets a type of rest it can’t necessarily get while you sleep at night. When we sleep, we dream, which leads to changes in our heart rate and breathing. We toss and turn and wake up when we are physically uncomfortable. This, in turn, leaves us feeling like we’ve done a lot of laying down, but not having received a lot of rest. When you meditate, you can be in any position, you are awake and aware, and your breathing and heart rate slow down. This is very healing for our nervous, cardiovascular, respiratory, and digestive systems. As lupus patients, we know that stress, tension, lack of sleep, etc... all lead to more pain for our bodies. Meditation helps us get to the source—the root of the suffering. Also, meditation gives us the awareness to isolate the pain, and strength to breathe through it without allowing it to cause unnecessary added emotional stress—which, in turn, would lead to more pain. It can be a vicious cycle, or it can be a peaceful one if you have the tools to move through it. A: How can people use meditation to cope with lupus? What are the benefits for people with lupus? L: As lupus patients, meditation,
in my opinion, is as important as the medications and all other precautions and treatments we take to stay alive. The added bonus of meditation is that it helps us to also FEEL alive, not just survive. What I mean by this, is that once you have a meditation practice of your own, you begin to see more beauty in the world, especially in yourself. Meditation is the act of being still and allowing. It can be a tool for lupus patients by showing us where our pain is coming from, why it’s happening, and the best part—softening the pain, whether the pain is physical or other. For example, when you meditate, it can be with the goal of silencing your mind and feeling the exhilaration that comes with achieving a few moments of complete and utter peace, or it can be used to breathe into an area of pain in the body or mind and relieve it. Meditation is not a cure, but it is absolutely a tool we have at our disposal, that can be done anywhere at any time, and it’s free! A: How has meditation helped you with your lupus? L: Oh my goodness, I love this question! I used to think that meditation helped me to heal myself from lupus. I had the longest remission of my life (8 years) that started just 3 months after my first class. When I re-
lapsed, it was a very humbling experience. The beauty of my latest flare was that this time I knew how to meditate. I knew not to panic, how to slow my heart rate with my breath. I knew how to calm my body, breathe into and through the pain, how to ground myself in the present moment, and how to feel safe even in the scariest of symptoms. A: Any advice for beginners? L: There are always classes online for free, or of course in yoga studios, community centers, and lots of other places.I would recommend an in-person class or a one-on-one class, so you can ask questions and give feedback, but it’s not necessary. Go with your comfort level. Do some research on your own about different types of meditation to see which resonates with you and your personality. For example, you might like to be alone and in silence, or you might prefer to be with a group of people all listening to a guided meditation. Guided meditations are a great place to start because instead of focusing on emptying your mind, you focus on the voice of the instructor and that will quiet your internal mindless chatter. It’s one of the most popular types of meditation. A: How can people incorporate consistent mindfulness and meditation into their lives? L: Here is an example of a simple grounding technique that can
be used anywhere, and is especially helpful for beginning each meditation to get you into the present moment: Close your eyes and silently name everything around you; white couch, yellow walls, brown hat, wood table, telephone, pizza, flowers, clothing, etc... until you feel the calmness wash over you. If you need to have your eyes open, that works too! This is a great tool to use while waiting in the doctors’ offices to keep anxiety and restlessness at bay. A: Are there any common challenges with meditation that you or others encounter? Any advice for those challenges? L: There are challenges to meditation! 1. Quieting the mind is the biggest, of course. Use the grounding practice above, or start with guided meditations! They give you a focus so the mindless chatter that seems unending during the day can step aside and allow you to be fully present. This practice will help ease you into a more developed practice of shutting the mind off at-will. 2. Getting comfortable. The first step of any meditation, after choosing a location, would be to make sure your physical body is comfortable so that it doesn’t distract you. You can lay down, sit up, or even stand, just as long as you are as comfortable as possible. It’s ideal to not move your body during
meditation unless you’re practicing a moving meditation of course. 3. Judging yourself. Please remind yourself that judging is a natural survival skill and that it serves no purpose in meditation. If you find that you are speaking negatively towards, or getting frustrated with, yourself, please take a breath and begin again. That is just wasted energy, and we need to respect every bit of energy we have as lupus patients. A: Is there anything else you’d like to mention? L: As a fellow lupus patient, I know that it’s normal for us to feel lost in the illness. We can feel lonely, forgotten, dismissed, rejected, confused, fearful, and anxious. Those feelings are common for us, but they don’t have to be. The most important thing I’d like to share is the reason I teach: Empowerment. Give yourself a meditation practice, and you will empower yourself. Meditate, and you will be reminded of how much strength you still have inside of you, and that this physical body is nice to have, but it does not make up all that we are. Without our minds, who are we? Start here. Start now. Thich Nhat-Hanh said, “Silence is essential. We need silence, just as much as we need air, just as much as plants need light. If our minds are crowded with words and thoughts, there is no space for us.” I don’t know about you, but I am done letting lupus take up any more space in my life than it has to.
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Disclaimer: Always check with your doctor before doing any companion therapies. These are not intended as substitutes for your medically advised care plan. As with any treatment, stay educated and get information from trusted sources.
TIP: Start slow; five minutes a day, then gradually increase as you’d like to. Eventually, it becomes second nature and you can meditate anywhere, but in the beginning, it’s best to have a schedule that stays the same, and in the same place every time. I began my practice with an old trunk in my bedroom being a spot I would sit in front of. I placed items on the trunk that brought me peace, happiness, and inspiration. Every night I would sit on the floor, look at them, and just be there in silence for 5-15 minutes before I would jump into bed and with a calm mind and heart, fall right to sleep. It can be as simple as that, but there are so many different ways to meditate, including walking meditations for those who can’t sit still!
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Suzanne Tierney, CEO/President 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.
Leslie Vizcarra
Vice President of Operations and Patient Navigator 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.
Amber Bills
PR & Marketing Coordinator Amber@lupusgreaterohio.org
I am so glad that I can apply my passion and skills toward such a great cause. I am part of the team driving marketing strategy so that we can build the LFA, GOC community, increase lupus awareness, and raise funds. I’m an alumna of Baldwin Wallace University, where I earned a B.A. in public relations and minored in English writing and marketing.
Kathy Holmes
Finance Manager 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 Hornikel
Fundraising & Development Coordinator Victoria@lupusgreaterohio.org
I joined the organization two years ago, shortly after graduating from Cleveland State University with a degree in Nonprofit Administration. If you call in, I will likely be the one greeting you. I also manage our digital and print communications, constituent database, the walk, and the chapter website. I am so grateful to have started my career at the LFA, GOC and to be learning from this brilliant team of skilled and passionate lupus advocates.
Adrienne Rice-Fernandez
Executive Assistant Adrienne@lupusgreaterohio.org
Dayne Logan Hammond Marketing Manager Dayne@lupusgreaterohio.org
I help with anything from grant writing, coordinating advocacy efforts, managing projects, writing/editing and whatever else our office needs. I’m also a patient, so finding a cause and a cure is especially important to me. I love speaking with patients and caregivers when they call the office because I can empathize and offer a sympathetic ear.
My background is in Digital Content Creation, specialized in graphic design, management of social media campaigns, and strategic analytics for potential development. I find great honor in working for a foundation responsible for marketing pertinent information, education, and updates for the Greater Ohio Region. My goal is to increase awareness, accurately represent the Lupus Foundation, and extend our reach in the quickly changing digital sector.
Aletha Acree
Stephanie Holmes
Community Outreach Coordinator 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 you can!
Social Media Intern Stephanie@lupusgreaterohio.org
I have a very long history with the LFA, GOC. My mom has lupus and she has worked here my entire life. I have seen this organization grow into what it is today, and I am so honored that I get use my skills and learn new ones. As a little girl, I would seal envelopes while my mom was working and now, I am posting to social media and editing videos for the LFA, GOC. I graduated from Capital University with a BA degree in media communications and a minor in public relations.
Looking for additional resources? Our toolkit is full of information about lupus for patients, caregivers, and providers. In addition, we have the most up-to-date information regarding the COVID-19 pandemic and its effect on people with lupus. Please visit our toolkit at lupus.org/ohio/resources/lupus-toolkit and our lupus & COVID-19 page lupus.org/ohio/coronavirus-lupus.