inspiring stories from our lupus community. Meet Natalie Galaszewski and her horse, Breeze. / p. 09
UPCOMING EVENTS! Our largest event of the year is ready to go! You can register for Columbus and Cleveland TODAY! / p. 06
There are many ways to get involved with the LFA, GOC. Find out the many ways and how you can give back to the lupus community. / p. 13
Greetings Fellow Lupians!
The cover of this issue has me captivated. It’s a joy to see both Breeze and Natalie, two stars I’ve come to know and admire over the years, gracing it.
Breeze and Natalie go hand in hand. They are both beautiful and passionate about living life to the fullest, no matter what life throws at them. I hope you enjoy reading their story. I know I certainly did.
What does taking the reins mean for us as lupus patients? For me, it means being more involved in my self-management when it comes to living with a chronic disease like lupus.
I get it. This is easier said than done. I do not have all the answers for my fellow lupians, but I do have the desire to help you along the way with the resources the chapter has to offer you. If you need some navigation, let us know.
Taking the reins for myself is a challenge, and I know it. I drown myself in my work. I am reckless when taking too much on or being non-compliant in my treatment plan. Like you, I need to be surrounded by others who know what I am going through so we can help each other.
The reality is that I fear I am not doing enough or that I may miss something that I could champion. I despise the word “can’t”. This word doesn’t create space for taking the reins and self-management. So, I have a lot of work to do. We can learn so much from each other through sharing and support.
I encourage you to take a deep dive into this magazine and see all of the work this chapter has done recently:
• We celebrated April with a jump on Minority Health Month. We collaborated on our first event with UH Cutler Center for Men. Over 300 people attended. We provided resources, screenings, education, and much needed lupus awareness.
• We had a team and table at the Men’s Minority Health Expo where over 600 attended.
• We attended the Advocacy Summit in Washington D.C.
• We hosted, in collaboration with Cleveland Clinic, the Scaling the Lupus Summit, which had over 100 in-person and online attendees.
• We tested our first statewide lupus support groups with all of our navigators and facilitators.
• We were also invited to the Rheumatologist Conference at Case Western Reserve University,The Nephrology 2024 Update, the Medical Dermatology Therapy Update III, and our National Annual Meeting.
• Our patient navigators worked tirelessly on calls and events across the state and garnered many city proclamations for Lupus Awareness Month.
• We planned and executed our first major fundraiser of the year. The Applied Invitational Golf Event was held at Signature Country Club on June 3, 2024. This event helped create awareness in the business community and raise much-needed dollars to support our mission.
Between all this, the staff and myself have been inundated with personal challenges. But we are blessed to have a fantastic team. Thanks to them for their passion and support of the lupus mission. Each day, we teach and encourage each other to take the reins. It certainly helps us to manage any issue in our lives better, whether lupus or anything else.
Blessings to all,
Suzanne Tierney President & CEO
Lupus Foundation of America, Greater Ohio Chapter
Pg. 1 - 2 Letter from Suzanne
Pg. 4-5 Patient Navigator Corner: June 2024
Pg. 6-8 Lupus Awareness Month
Pg. 9-10 2024 National Advocacy Summit
Pg. 11-12 Patient Story: Natalie Galaszewski
Pg. 13-14 Get Involved and Ways To Give
Pg. 15-17 Advocate, Educate, Celebrate!
Pg. 18-19 The Benefits of Equine Therapy
Pg. 20-22 Research and News
Pg. 23-26 How to Get the Most Out of Your Relationship with Your Lupus Doctor
Pg. 27 Podcast
Pg. 28-29 Could You Have Lupus?
Pg. 30 Staff Page
2326 1517 Advocate, Educate, Celebrate! How to Get the Most Out of Your Relationship with Your Lupus Doctor 6-8 Lupus Awareness Month
1112 Patient Story: Natalie Galaszewski
The Patient Navigator program is funded in part by Aurinia Pharmaceuticals and an earmark from the State of Ohio and managed by the Ohio Department of Health.
As lupians know first-hand, having lupus can be very challenging. Daily symptoms can affect every part of life, which can make living with lupus overwhelming. It can be difficult to know where to start. There are many things you, the lupus warrior, can do to “take the reins” and manage your disease. Two important tools that can help are lupus journals and flare plans.
A lupus journal or a lupus diary helps you document your unique lupus journey and can be an important part of your treatment plan1. It can help focus you on yourself - your symptoms, your triggers, your response to treatment, how you feel, and how lupus is affecting your daily activites. By tracking your journey on a regular basis, you develop an understanding of your lupus and what is “normal” for you. You can notice trends of new and/or worsening symptoms, so that you can contact your doctor in a timely manner and hopefully prevent flares or treat them as soon as they occur. You also can also see patterns on how lupus is impacting your daily life, and make adjustments as needed.
You can write in a notebook or binder or record digitally in an app, whatever method works best for you. How often you write in your journal and how much information you document is totally up to you. Your lupus journal can be simple or complex, whatever you feel you need to keep track of. In general, a lupus journal may contain:
• Daily symptoms: What are they? How often do you have them? Are they continuous or do they come and go? How mild or severe are they? Is there anything that you do that makes the symptoms better? Are there any new symptoms that you have not experienced before?
• Triggers: What are they? What do you do to avoid them?
• Medications: What are they for? How do you take them? How often do you take them? Do you have any changes in your symptoms? Do you have any side effects? Are you missing or not taking doses and why?
• Doctor’s instructions: What are they? Do they help your symptoms? Are you following them?
• Non-medication treatments or activities: Are there treatments or activities that make you feel better? (for example: hot or cold packs for pain; going for a short walk to relieve stiffness; taking a nap during the day to improve fatigue, etc.) what do\es and does not work for you?
• Feelings or mood tracker: How are you feeling (happy, depressed, anxious, etc?) How often do you feel this way? How mild or severe? Is there anything you do that makes you feel better? Are there any new feelings that you have not felt before?
• Your next doctor’s appointment: What information about your lupus do you want to share? How is your lupus impacting you? Do you have any medication side
effects? Did you change or stop any medications? Do you have any questions?
A lupus flare plan is a natural extension of your lupus journal. The Lupus Foundation of America’s Your Lupus Flare Plan “is designed for you to fill in with help from the doctor who is managing your lupus care and treatment.”2
If you do notice new symptoms or your symptoms are worse or more frequent, you and your doctor should discuss what you should do so that you can prevent flares or treat them as early as possible. The plan includes the following steps2:
1. If I think I’m having a flare, will my rheumatologist want to see me immediately?
• If yes, what should I tell the receptionist to make sure I’m seen as soon as possible?
• What should I do if I’m told that the next appointment is several weeks away?
2. Should I have blood and urine tests done during every flare?
• If yes, what is the procedure I should follow to have the tests ordered and done quickly?
• How quickly does it take to get test results?
• How do I find out the results and what do they mean?
3. How will I recognize symptoms of a lupus flare?
• This is a list of common symptoms that could indicate a lupus flare. Check all that you are currently having and share them with your doctor.
• Fatigue
• Joint pain
• Joint stiffness
• Hair loss
• Sores in mouth or nose
• Chest pain that hurts upon breathing in
• Numbness, tingling, burning pain
• Skin rash or sores
• Fever (NOTE: if you have a fever, see a doctor immediately to find out whether the fever is due to an infection or due to lupus)
• Others (list)
4. The symptoms you had when you were first diagnosed with systemic lupus will often repeat themselves during flares.
• Write down symptoms you had when you were diagnosed.
5. Lupus problems or symptoms that occurred after your diagnosis of lupus was made also may recur during lupus flares.
• Write down these symptoms.
6. A new symptom you’ve never had before might mean a lupus flare is underway. A new symptom also could be due to something else (for example, a medication side effect or a viral illness).
• Write down these symptoms.
7. What can I do myself at home to help with each flare problem?
8. There are certain flare triggers that are commonly experienced by people with lupus.
• Record all that you have experienced in the past 2 weeks:
• Ultraviolet (UV) light exposure
• Cigarette smoke
• Sulfa antibiotics
• Echinacea herbal supplements
• Alfalfa and mung bean sprouts
• Stress
• Low vitamin D
• Not taking medications as prescribed
• Others (list)
9. For what problems should I seek urgent medical care, such as going to my closest urgent care center or emergency room?
• Numbness on an entire half of body or face, especially if accompanied by weakness, difficulty talking, confusion, loss of coordination, vision problems
• Temperature greater than 100.5 °F, especially if accompanied by chills
• New-onset chest pain or shortness of breath
• Pain, swelling, and possible redness of the calf area
• Weakness of an arm, leg, or side of the face
• New-onset severe headache, especially if accompanied by nausea/vomiting, fever, weakness or numbness of arm/leg/ face, or if it is “by far the worst headache I’ve had in my life.”
• New-onset severe abdominal pain especially if accompanied by fever, nausea/vomiting, blood in the stool, black asphalt-like stool
• Sudden onset blurred vision especially if accompanied with blindness in one eye, red eye, fever, headache
10. FINAL STEP: Show your doctor the flare plan and ask if he or she agrees or would make any changes. Ask your doctor if there is anything to add in light of your particular lupus problems and medications.
Taking control of your lupus journey is possible, and keeping a lupus journal and creating a lupus flare plan can help. If you are interested in starting a lupus journal and/or flare plan, there are some that can be ordered or downloaded at www.lupusgreaterohio.org.
If you would like to speak with a patient navigator about lupus journals and flare plans, please contact us at 1 (888) NO-LUPUS, (440) 7170183, or info@lupusgreaterohio. org. We are happy to help!
References:
1. Living with Lupus Fact Sheet. Lupus Foundation of America. https://lupusgreaterohio.org/wp-content/uploads/2021/02/Living-with-Lupus-compressed.pdf
2. Your Lupus Flare Plan. Lupus Foundation of America. https:// lupusgreaterohio.org/wp-content/ uploads/2023/11/Your-Lupus-FlarePlan 2023-compressed.pdf
BY ALEX ACEVEDO
May is an important month for people around the country. Mother’s Day, prom, graduation, Memorial Day, and the unofficial kickoff of wedding season and summer! For all of us in the lupus community, it means much more. May is also Lupus Awareness Month (LAM), filled with excitement, chaos, and joy for us at the chapter. We build our events and programming schedule around what we are doing in May! While LAM was created to spread awareness, we also try to make it a special time for our fellow lupus warriors as well. So, with that in mind, we want to provide a brief recap of what we did this year!
On May 4th we held our Scaling the Lupus Summit in collaboration with Cleveland Clinic! This hybrid event was held at Cleveland Clinic’s Administrative Campus in Beachwood and was accompanied by a live stream for those in other parts of the state. Nearly 100
combined attendees listened to experts from the Cleveland Clinic talk about Lupus Nephritis, Cardiology, Dermatology, and new research! We want to thank the Cleveland Clinic, Ohio Department of Health, Ohio Commission on Minority Health, GSK Pharmaceuticals, Aurinia Pharmaceuticals, and Mallinckrodt Pharmaceuticals for making this event possible. Special thanks to our speakers: Dr. Laura Ferreira-Provenzano, Dr. Samuel Kelly, Dr. Anthony Fernandez, and Dr. Emily Littlejohn for providing such excellent information and for answering patients’ questions!
Each year our patient navigators and facilitators reach out to local mayors’ offices across the state in hopes of them issuing a city proclamation officially declaring May as Lupus Awareness Month in their city! This year was especially fruitful as we received blank proclamations. Thank you to the cities of Waterville, Toledo, and Findlay.
Also, to Cuyahoga County and also Governor DeWine and the State of Ohio!
May 10th is World Lupus Day also referred to as Put On Purple Day! Every year we encourage all of our Lupus Warriors and their supporters to wear as much purple as possible to shed light on lupus! As always, patients across Ohio answered the call and showed up in a big way! We loved seeing all of the pictures shared on social media throughout the day. In addition, we are always looking for buildings or bridges throughout the state that we can light up for the big occasion. This year we were honored that the Terminal Tower in Cleveland, and Fountain Square in Cincinnati lit up purple for lupus! Amazingly, we were even given a massive, purple-tinted light show courtesy of Mother Nature and the Aurora Borealis!
As you have heard us mention before, our chapter is fortunate to have the continued support of our state legislature. A portion of the funds provided by the Ohio Department of Health and the Ohio Commission on Minority Health are used to run statewide awareness campaigns across various platforms. In May you may have seen our “Someone You Know” campaign on billboards, streaming
services, or cable. We also ran ads on radio stations across the state!
The most exciting thing we did for Lupus Awareness Month was join fellow advocates in Washington DC. It is always a privilege to meet with any legislator at the local, state, or federal level. When we join the LFA National office and chapter network it is incredibly special. Suzanne, our CEO, was
joined by Nikki Roberts, Rosie Chapman, Ariel Shelton, and many other patients and caregivers from Ohio. They met with many congress members in both the House of Representatives as well as the Senate. The purpose of these trips is to advocate for continued and increased funding for lupus research from organizations like the Center for Disease Control, the National Institute of Health, the Department of Defense, and other health organizations. Collectively,
the LFA had over 300 advocates attend in person and many more participated virtually. While trips like these can be exhausting, especially for patients, they always seem to serve as inspiration and reignite our passion to eradicate this terrible disease.
While it was a busy May, it was exciting and rewarding for us
to get out of the office and into communities to see all of you. Now it’s time to shift our attention and push full steam ahead into the walk season! Let’s harness the energy and momentum built off a successful May to make this year’s walks our biggest ever! In case you missed the announcements we will have walks in both Columbus and Cleveland this year. The Columbus
Walk To End Lupus Now® returns on Saturday, August 17th, 2024, at the Center of Science & Industry (COSI). The Cleveland Walk To End Lupus Now® is Saturday, September 14th, 2024, on Old River Road in the Flats East Bank! Registration is open for both walks and is found at lupusgreaterohio.org/walk.
By Suzanne Tierney, Lupus Patient First
The 2024 National Lupus Advocacy Summit was held in Washington D.C. from May 19th through May 21st. The purpose of the Summit is to bring lupus warriors together from all over the country to learn from experts about the latest in
lupus research, connect with hundreds of fellow lupus warriors, and advocate for increased research funding, ensure access to care, and advance policies to improve the lives of all people with lupus.
I cannot tell you what a privilege it is to participate in this event each year. Can you imagine standing next to over 350 fellow lupus warriors, all dressed in purple? I can tell you that the synergy we create is indescribable. The power that surges through the collective group is palpable as we make history by turning Capitol Hill purple. It is truly a profound and humbling experience.
Eleven other passionate individuals from Ohio shared the experience of meeting with nine of our legislators. We spoke about our personal battles with lupus and aimed to raise awareness about
the complex and enigmatic nature of lupus and what we battle daily. The conversations and stories shared on the Hill will have a lasting impact and I am grateful to all who participated.
Our mission was clear. To educate, raise awareness, and advocate for policies that would benefit all impacted by lupus. This included advocating for increased funding for the Centers for Disease Control (CDC), the Department of Defense (DOD), the National Institutes of Health (NIH), and the Office on Minority Health. All of these are crucial institutions in the fight against lupus.
Much work must be done to find the cause, cure, and better treatments for lupus. We appealed directly to our legislators to:
• Cosponsor the Safe Step Act, which would help ensure lupus patients have access to the treatments they need, which are prescribed by their doctor. The bill would restrict dangerous step therapy policies that require patients to fail on treatment before they can access the one they need.
• Cosponsor the HELP Copays Act, which would improve the affordability of medications and ensure patient assistance programs count towards their deductible and out-of-pocket maximum.
A special shout-out to Ariel Shelton and Rosie Chapman. Both received Summit Scholarships from the Ohio Chapter for being our superstar top Walk to End Lupus Now® fundraisers in 2023.
I can still feel my heart racing as we proudly marched down the large corridors, searching for our state congressmen and women. It was a privilege to lead the charge for Ohio and be accompanied by Gloria, Tammy, Robbie, Nikki, Larissa, Sharon, Mary, Brittney, Ariel, Rosie, and Emma. They did a phenomenal job in advocating for everyone in Ohio impacted by lupus. Thank you to all!
I came back exhausted and knew that my lupus was not responding well but my heart was. It was truly an incredible experience, one I hope to make again. Perhaps one of you reading this magazine will be next year’s Summit Scholarship Winner and will join me on Capitol Hill.
By Natalie Galaszewski
I was officially diagnosed with Lupus in my mid 20’s but had experienced symptoms as early as 9. It took many doctors, many misdiagnoses, and multiple organ issues to get me where I am today; and we are still organizing some of the puzzle pieces that may have fallen on the floor in the process. My lupus journey has been lots of trial and error, and I feel most patients likely experience this as well.
I have the autoimmune combo package as I like to call it. It all started with my pancreas failing out of nowhere which threw me into the whirlwind of type 1 diabetes, but also being an insulin resistant diabetic. It wasn’t until a couple years ago with the new omnipod technology that helped shape my diabetes into a more manageable disease. From there I spiraled into Hashimoto’s, gastroparesis, fibromyalgia, early kidney disease, postural orthostatic tachycardia syndrome, gastroesophageal reflux disease, and the list goes on. My
heart finally stopped cooperating at age 24 which, after two cardiac ablations, led me to need a pacemaker. I went from tachycardia to bradycardia after a failed ablation. They also managed at that time to perforate my heart with my ventricular lead, rendering it useless. Luckily, I am surviving off of my atrial lead for the time being. A year or so ago I received my 2nd pacemaker. To say my history is complicated would be an understatement. At the beginning of this year, I hit my 18th surgery! My coworker jokes that “when” I hit 20 we’re going out to celebrate. Fair enough! I couldn’t possibly take the time in this article to touch on those 18 bullet points in my life, but they do all tend to circle back around to lupus.
In my lupus journey, I have unfortunately failed on many of the traditional therapies. I am on drug numbers eight and nine now. During the last two years, I have been receiving Saphnelo infusions every
4 weeks and taking Tacrolimus as my daily maintenance medication. So far, we are seeing some positive results on paper when it comes to inflammation and white blood count levels; but as for that lovely chronic fatigue we all endure, there is no relief so far. I still experience joint pain, nerve pain, and muscle pain depending on who wants to be the star for that day. They all like to take turns. Mostly I find relief in keeping an active lifestyle. I work full time as a pharmacy technician, manage my own house, and take care of my pets. My biggest “therapy” in life though has to be my horse, Breeze. I find comfort in animals and in him especially. I got him when he was 4, and we just celebrated his 27th birthday on May 1st. If you haven’t guessed yet, we are taking a very literal approach to “reining in lupus” this month. My horse has been a huge part of my life, my recovery, and my journey into the future. He has walked by my side as I wobbled along on a walker
after I broke my leg, stood as I used him to brace doing physical therapy exercises, been my big shoulder to cry on, my trail riding partner when I needed to escape life, and my most loyal friend. He never judges and moves whatever pace I am comfortable with for that day. Some look at us and wonder where I get the energy to not only take care of myself daily, but also him. Easy answer - it’s never hard when you love them. He takes care of me as much as I take care of him. We have a bond and a level of communication most people don’t have. If I am going to battle chronic fatigue every day and get through a day at work, having that piece at the end of the day that doesn’t feel like work, is key to a work/life balance that’s often hard to achieve. Obviously, this is not a therapy fit for all, but it has been my most beneficial to my mental and physical state.
I am not hard wired for lots of down time. I stay busy and keep moving forward. Do I burn out sometimes? Yes, but I reboot and pick myself back up. I travel, find new hobbies, and make time to do things I enjoy (not as often as I probably should). If I could give anyone just one piece of advice, it’s that an un-stimulated mind is one of the most detrimental states we can put ourselves in dealing with this cruel mysterious disease. We need rest, but we also need purpose. We need a hobby or a craft that speaks to us on a level that lessens the hard moments. If I am going to be tired anyways, I might as well be tired with my horse!
Everyone needs an outlet in life, and he is mine through thick and thin. I have been riding horses and doing some form of karate since I was 5. Through my illnesses I have managed to hold onto those outlets as my source of de-stressing.
Last year I was hospitalized for septic pneumonia, and it nearly took me out. I have had many health scares, but this one took the cake and has still impacted some of my medical conditions to this day. It was a long road and a challenge getting back home and back on my feet. I went back to work pretty much immediately. My mom traveled up during this time to help out with the animals while I was in the hospital, and one of the first questions she asked when I got discharged was “you want to go to the barn don’t you?” And, that is absolutely what we did- oxygen in tow. Breeze was not particularly a fan of the temporary oxygen tank, but he took it all in stride as he’s done every other challenge we’ve faced together. We built my stamina back up by taking daily walks together and getting my routine
back on track. He would pause to let me catch my breath and push me just a little further each day.
Lupus is a hard journey for any who experiences it. Support is crucial, whether it be a person, a place, or an animal. My horse, Breeze, is an integral part of my support system and regularly helps me rein in my lupus. I am a naturally very strong confident person, but there are days where I have doubts on what else I can possibly handle in this life. There seems to always be a new challenge to overcome, but we keep on fighting and persevering the best ways we know how. I hope that every lupus warrior can find their own version of what Breeze is to me and live their best life. We all deserve a support system to keep the fight going.
By: Adrienne Rice-Fernandez
This quarter, Living with Lupus magazine is focused on taking the reins of your lupus and making the most of life with a chronic illness. Over the past decade that I have worked for the Lupus Foundation of America, Greater Ohio Chapter (LFA,GOC), I’ve had the privilege of speaking with many lupus patients. Every patient is different. Some have a positive outlook, and some struggle to remain optimistic. Often it depends on whether a patient is having a flare, their support system, their spirituality, and previous life experience(s).
All lupus patients know that we have periods of remission and flares. Sometimes we feel great, and other times we feel awful. So, what can we do? Sometimes it’s about taking back the control we’ve lost. One of the ways we can do this is through the power of advocacy. The Missouri Foundation for Health defines advocacy as,
“any action that speaks in favor of, recommends, argues for a cause, supports or defends, or pleads on behalf of others.” At the LFA, GOC, we take it a step further. It is important to advocate not only for others but also for oneself.
You have seen us and many of our volunteer advocates at the Ohio State Capitol and Capitol Hill in Washington D.C., advocating for lupus funding as well as creating awareness. These are both incredibly important actions. There is also a lot of communication and letter writing that goes on behind the scenes in support of or opposition to many bills that are proposed. It takes a lot of effort to weed through the political bureaucracy and figure out what is important to the lupus agenda. Lupus patients, even when they aren’t feeling well, can take control by participating in letter writing and phone calls to state and national legislators.
When the office puts out a call to action, take back your power by responding. These small actions have big consequences, and we encourage you to get involved and do what you can.
Another way advocacy can help us, as patients, feel better about our circumstances, is to become self-advocates. Self-advocacy is about communicating your needs, speaking up for yourself, educating yourself, asking questions, and working with your provider to create a healthcare plan that works for you. Many of us feel intimidated by healthcare professionals, but let me tell you, there is no dumb question. The more you educate yourself by asking questions, the more informed you will be and the better you will feel about the decisions that are being made regarding your plan of care. It is ok to ask your doctor what side effects can be expected, explain your limits,
and just say no. However, make sure you understand the consequences before you make these decisions. Have open and honest conversations with your physician and make sure if you don’t understand something that you ask for clarification. The more knowledgeable you feel, the better positioned you will be to take control of your health and ensure you are not just a bystander in your lupus journey. You can take the reins today by being an advocate for yourself. And if you are not up to the task because of how awful you feel, appoint someone you know. Make sure you plan for this ahead of time and ensure your advocate knows your wishes. Put it in writing so they can refer back to it.
Educating yourself is also another way we encourage lupus patients to empower themselves. We can educate ourselves by asking questions when we are at the doctor’s, reaching out to organizations
like the LFA, GOC, and seeking resources that come from reputable sources. Unfortunately, this excludes Dr. Google. But the good news is that there are plenty of resources like government agencies, hospitals, medical schools, and peer-reviewed journals. One way to ensure that medical information is justified is to validate the author. Where did that person receive their training? Are they board-certified in rheumatology or another specialty? Do they have a PhD? Where do they work? You can also validate medical information by doing a fact-check search. When in doubt, ask your doctor!
It is important to remember that we are not trained medical professionals (at least not all of us), but that doesn’t mean we cannot gain knowledge. The more we know, the more we can use our intellect to help manage our disease. In my job, I encourage all lupus patients to celebrate and honor
their journey. No, it is not fun having lupus. I know this firsthand. However, we can learn to celebrate our strengths and foster a positive outlook for all we’ve overcome. You may have recently been hospitalized and worked very hard through physical and occupational therapy and finally made it home... congratulations! Perhaps you couldn’t get any work done last week but this week you managed to make lunches for your kids and clean the bathroom… well done! We can celebrate our successes, big or small, by recognizing what we have done. Try not to compare yourself to your healthy friends and neighbors. They won’t understand your struggle. But make sure you are gentle with yourself, and you give yourself credit where it
No, it is not fun having lupus. I know this firsthand. However, we can learn to celebrate our strengths and foster a positive outlook for all we’ve overcome.
is due. Celebrate your success(es). You deserve it.
There are many more things that can be done to help you take the reins of your lupus, feel more in control, and foster better self-management. Consider some of the following:
• Practice gratitude – always be thankful, even for the little things. This mindset goes a long way in creating a path toward better health and seeing things from a different perspective.
• Journal – this is an excellent way to track symptoms and remember important conversations to have with your doctor.
• Set goals – make a list of things
you would like to do. Check them off as you accomplish them. It will make you feel good.
• Focus on quality – do what you need to do to stay healthy. Eat well, don’t smoke, limit sun exposure, etc.
• Practice self-care – we call it “Self-Care Sunday”. Each week take time to do something for yourself. Whether it’s a power nap, yoga, or a facemask, do something to prioritize yourself.
• Stay connected – make sure to reach out to your social network and even volunteer if you are up to it.
• Practice acceptance – know that some days will be better than
others. Permit yourself to rest and don’t push yourself to do more than is acceptable.
• Prioritize your mental health –check in with yourself and be sure that if you need additional support, you reach out. There is no shame in needing a counselor to deal with your situation.
As patients, we can live with lupus successfully and make the most out of life with chronic illness. We can better manage our disease by advocating for ourselves, becoming educated about lupus, and celebrating our successes! Don’t sell yourself short. We are worth it and deserve to feel in control and accomplished. Take the reins of your lupus and don’t let go!
Published with permission of Therapeutic Riding Center at Fieldstone Farms
Equine-Assisted Therapy (EAT) utilizes a range of treatments and therapies that involve horses and other equines to promote physical and mental health. We are fortunate here in Ohio to have one of the largest and most respected therapeutic equine centers in the United States, Fieldstone Farms, located in Chagrin Falls. They serve more than 900 students annually. Their therapy horses help people of all ages, with a variety of emotional, physical, and cognitive challenges.
Their largest population of students are those struggling with mental health disorders including
anxiety, depression, OCD, PTSD, grief, and survivors of trauma, cancer, and violence, totaling close to 50 percent. They are also wellversed in working with students with a variety of cognitive and physical challenges including autism, cerebral palsy, neurological disorders, and sight impairments, among others. Ranging in age from four to 80 years old and older, their students come from throughout Northeast Ohio. Benefits of equine therapy include:
Mindfulness — When you first meet a horse, you immediately feel their power. They naturally enable you to be fully present as they
react to your presence. This mindfulness helps the students overcome anxiety, open up pathways to learning, and regulate emotions.
Empathy — While grooming a horse, students develop a connection that soothes, calms, and restores emotional health. A horse’s empathetic nature helps people feel understood and not alone.
Confidence — Sitting atop a 1,500-pound horse and learning to control its gait is empowering. Horses teach us about teamwork. And it is exhilarating to feel the wind on your face as a horse carries you to places you’ve never
been.
Strength — Riding improves posture and builds core and leg strength as our students sit tall and stretch and squeeze their legs around the horse’s body. It improves balance as a rider responds to the horse’s movement underneath them. Riding increases coordination as students learn to move their legs, feet, core, shoulders, hips, hands, and fingers to communicate with the horse and control their speed and direction.
Learning -- The real-life learning that happens at the farm can help students understand concepts that may be difficult to tackle in the classroom. For example,
converting inches to feet is easier when you are measuring a horse up close and personal, rather than studying in a book. Asking children to write about their interactions with horses, or simply reading to the horses, can improve literacy and expression. And learning geography as we expose students to our horses’ origins helps bring the world to life.
At the Lupus Foundation of America, Greater Ohio Chapter, we encourage many different outlets for living life with lupus. This ranges from traditional medicine to alternative therapies like yoga and acupressure. Many patients we hear from have described incredi-
ble benefits from equine therapy. This is seen by reading the article in this magazine about Breeze and Natalie. Horses can help patients with confidence, strength, relaxation, and more. The benefits of equine therapy are well documented.
For more information about Fieldstone Farms, visit Fieldstonefarm. org, or you can also reach them by phone at (440) 708-0013. For more information about Equine-Assisted Therapy or to locate an equine therapist near you, visit www. americanhippotherapyassociation. org/.
The U.S. Food & Drug Administration (FDA) has granted approval for a novel and less invasive belimumab (Benlysta®) treatment for children with systemic lupus erythematosus (SLE) ages five years and older to be administered by injection. This is the first and only treatment of its kind for children receiving standard therapy.
With provider approval, the pediatric autoinjector will enable children to be treated at-home by their caregiver, eliminating the need for children to travel to a hospital or clinic setting for treatment. The autoinjector will be available immediately.
Continue to follow the Lupus
Foundation of America for updates on lupus drug developments.
Learn more about Benlysta: https://www.lupus.org/news/ fda-approves-benlysta-autoinjector-for-treatment-of-children-with-systemic-lupus-erythematosus
Day-to-day life with lupus can be challenging and take a toll on your mental health. A study examined the prevalence of people with depression and systemic lupus erythematosus (SLE) and found depression was highly prevalent, but often undiagnosed.
The study included 40 people (37 female; 3 male) with SLE who had no history of depression or anxiety. Each individual completed a survey that captured their socio-demographic information, mental health activity, and SLE disease
activity. Researchers evaluated depression levels using the Patient Health Questionnaire 9 (PHQ-9) scale, which is used to diagnose severe depression, and found a direct correlation between SLE disease activity and depression.
Of the group, 38 of the 40 participants had some degree of depression with 20% mild, 37.5% moderate, and 37.5% severe depression. Furthermore, the research suggests that SLE disease activity and severity plays a role in the intensity of depression and anxiety.
Treating depression is vital to managing lupus disease activity and improving quality of life. While treatments for lupus are important to help control and manage symptoms, mental health cannot be neglected by healthcare providers.
Learn more about managing your mental health with lupus: https:// www.lupus.org/news/study-reveals-depression-is-often-undiagnosed-in-people-with-systemic-lupus-erythematosus
A new study published in Lupus Science & Medicine found a new diagnostic and disease activity monitoring biomarker for systemic lupus erythematosus (SLE) which could help understand pathogenesis, identify therapeutic targets, and guide clinical management.
In the study, researchers performed an analysis which grouped B cells from people with SLE into different gene models and related them to clinical features. The analysis revealed one gene module was significantly correlated with SLE
clinical features and associated with the type 1 interferon (IFN) pathway, which impacts B cell functions involving SLE. Researchers focused on long non-coding RNAs (IncRNAs) and found IncRNA RP11-273G15.2 was highly present in all B cells of people with SLE, but not the healthy controls or those with other autoimmune diseases. Additionally, RP11-273G15.2 was positively correlated with IFN scores and disease activity which leads researchers to believe the IncRNA could act as a diagnostic and disease activity biomarker.
Because SLE is unpredictable, monitoring disease activity and timely interventions are very important. Further studies are needed to investigate RP11-273G15.2 as a potential biomarker for SLE treatment.
Learn more about diagnosing lupus: https://www.lupus.org/ news/potential-new-diagnostic-and-disease-monitoring-biomarker-for-systemic-lupus-erythematosus
By Maria J Antonelli, MD
A person finds himself or herself in a vulnerable position when they seek medical care. They are asking for advice on what is going on with their body, figuring out their disease, and asking what they can do to feel better or live their best life. I have found through my decade of practicing medicine that it might take months or even years to develop enough trust for patients to tell me their true concerns. It’s sometimes years into a relationship before I hear their deepest fears about why they aren’t taking their medicines, what trauma they have suffered, or why they continue to smoke. Unfortunately, a lot of physicians pass judgment on their patients and voice that judgment which creates barriers to trust-building. There are easy excuses: many physicians are burnt out, have to see too many patients per day, and get frustrated by patients who don’t “do what they’re told.” But this is unacceptable. We, as physicians, should all do better: NO physician should project his or her frustrations onto the patient. I always assume my patients are taking their medications regularly. However, if I don’t know if my patient is taking their medication or not, it quickly adds a sticky layer
of complexity to figuring out what might be going on. Many medications used to treat lupus suppress the immune system, but also come with a host of other side effects: causing weight gain, swelling, and fatigue. Sometimes lupus medications don’t immediately make a person feel better. Sometimes these medicines treat things that are hard to see, like the kidneys or low blood counts, and even if they DON’T cause unwanted side effects, they don’t necessarily make a person feel better at all! I can understand why it’s hard to want to take a medicine that doesn’t feel like it’s doing anything! This article touches on some of the most common issues and concerns I see that occur with my patients. Below are some tips to keep in mind as you (or a loved one with lupus) approach lupus care with your rheumatologist and primary care physician.
Through my years of practicing, I have figured out that patients come to me for three main reasons: 1. Patients want to feel better. They just want help with something that’s going on with their
body that doesn’t seem normal. 2. Patients want to put a name on the symptoms they are having, i.e. they want a name for the disease or things that are affecting them (or they want to know if it’s normal!).
3. Patients want more information about the disease that someone diagnosed them with. Sometimes patients have a combination of desires when they come. Sometimes patients don’t even know why they come! They present at the behest of their spouse, parent, or child. I need to try to figure this out as the encounter will go very differently; this sets the tone for what you are trying to accomplish. However, it’s best if you think about this and just tell your physician!
In the old days, a person had a GP (general practitioner) who took care of all their needs, delivered their family’s babies, and maybe did surgery when needed! Now, medical care has expanded and we know so much more than we did even 2-3 decades ago. Every person should have a primary care physician (family practice, internal medicine, geriatrician, gynecologist) who can ‘quarterback’ all of
his or her medical issues. In today’s medicine, lupus scares many primary care providers because it can present in many ways. I like to think of all medicine as a pie; primary care providers take care of a small pie (but the whole thing); rheumatologists take care of lupus and other autoimmune conditions (a small slice of the pie but we know a lot MORE about that slice than anyone else). I think it’s normal to have difficulty navigating the system: “Why does my lupus doctor care about my blood pressure? Should I ask my primary care doctor about my vaginal itch? Or my rheumatologist?” I think it’s perfectly ok to ask, ‘Is this issue for my rheumatologist or my primary care doc?’ at your visit, through MyChart, or on a nurse call as you learn to navigate our complex medical system throughout your journey.
Sometimes a patient is very sick and there is an immediate need for me to address a concern that may be organ-threatening (i.e. their kidneys are starting to fail and the window for treatment is ending). And at the same time, maybe this issue is not very important to the patient. What may be important to them may be something completely different than what is important to me as a clinician. I need to figure this out and try to meet the patient halfway. At least address their concern and yet make sure my concern is addressed, especially if there is a closing window (like with the kidneys). Sometimes it is frustrating to the patient that I want to address something that they don’t find important. I try to convey this to my patient when I am stressing the
importance of tests that have to be done now or treatment decisions that need to be made immediately. I know this can be frustrating. If you aren’t sure about the importance of something your doctor is asking you to do, just ask “Can this wait a few weeks? Do we have to decide today?”
I’ve had many patients tell me that prior physicians have made them feel shameful about being honest. I remember a patient who told me her first doctor said, “If you don’t take the medication, you’ll break a bone in the next one to two years.” She had such anxiety and shame for being indecisive about whether to take medication for her osteoporosis. She didn’t go back to that doctor nor see another about her condition for years. No doctor (or nurse, or anybody really, except God!) knows the future! I was so mad hearing that story and how that “healer” made this person feel like this. You do not have to accept this kind of behavior. Healthcare today makes our encounters very brief; the physician who doesn’t know the whole story is passing judgment in a situation in which he or she has not walked. Do not tolerate this. Always be honest but remember physicians are humans. We make mistakes and if one makes you feel embarrassed rather than being empathetic to your journey, consider a second opinion.
Need
MyChart (Immediate Access) Now, with MyChart and other secure healthcare email platforms, we have immediate access to our doctors at any given moment. We have to learn to balance asking our doctor about every concern that
bothers us and immediate access which can lead to physician burnout. I have seen this in my practice: when a patient knows I am very accessible on MyChart, sometimes I receive three or four messages in the same day and multiple messages in the same week all from the same patient. Like all physicians, I am only human, and unfortunately, this becomes a ‘boy who cried wolf’ situation. I see the name and I know that message is probably one of many tiny, small concerns and not something very important to this patient’s health.
As physicians, we learn to triage with levels of importance: learn to trust your gut. Most healthcare systems and even private offices have a triage nurse (a nurse who takes calls and helps review concerns by phone to decide does the patient needs to go to the emergency room or urgent care, or can the issue wait until the doctor gives non-urgent advice over the phone versus wait until the next visit. Some concerns that should prompt a phone call to the office and nurse triage: are blood in the urine, fever (especially on immune-suppressing medications), pus, new chest pain, or shortness of breath. Some issues of lesser importance that might be better managed through MyChart would be a new rash, a new symptom that you are unsure of is related to your lupus, and questions regarding medication. Often patients want to know what my assessment of the laboratory tests is after a visit- I try to emphasize that if laboratory test results change the treatment plan, my team will reach out. Most physicians review 50-100 laboratory results daily and are unable to reach out about each result, especially those that
won’t change disease management. If there are questions about test results, MyChart might be ok; or waiting until the next visit to review the results together with a discussion. Consider making a full list of concerns to bring to the next visit. Only reach out if a symptom question or concern needs to be addressed before the next visit. We trust you know what’s going on with your body!
Many patients are unaware that in today’s healthcare systems, most doctors don’t get more than 20 minutes with their patient (and that includes time to check in with the medical assistant and review medicines, check blood pressure, weight, etc.). That’s a very short period to talk about their issues, uncover fears, and dig into deep subjects (all while building rapport and trust). I might have to see a patient for 4-5 visits over a year before I even spend a total of two hours with them alone. Bringing a list of your top concerns can help narrow down your issues and make the most of your visits.
Today in America in 2024, we have
endless possibilities. We scroll through Amazon, Etsy, and Temu, and the scrolling never stops. We think this is true of medications. ‘This medicine has side effects that I can’t tolerate so we’ll find another one.’ Unfortunately, we have a very finite number of medicine options that we can use to treat lupus. I wish we had endless options to go through, however, there are probably under 20 different medications, and depending on the type of lupus, it might be only limited to 10 or less. This has changed dramatically over the last two decades, but we are still not in a position where we can give up on some of our lupus medications. If medication compliance is a problem for you, if you are experiencing side effects that you think are related to the medicine, don’t just stop taking it. Talk to your doctor about what you think might be happening. Sometimes, how you take a medicine or add another medicine to help offset any side effects can help tolerability. For example, mycophenolate, a commonly used medication for lupus kidney disease, can often give patients an upset stomach, nausea, or diarrhea. Sometimes a patient can tolerate the symptoms by starting with a very low dose and
slowly increasing. Sometimes that doesn’t work, but moving toward a specialized coated version (more expensive, called mycophenolic acid) can help. It’s important to convince the insurance company that this is necessary so that they will pay for it. If I don’t hear from the patient that they are having trouble with it, and the patient just stops taking it, I might assume the drug has failed to help his or her lupus. If a doctor doesn’t document drug failure, sometimes this creates barriers to newer or more expensive drugs.
#1. Trust your doctor: This might come with weeks, months, or even years of working with a single physician or team who works well together with you. It might not come easily, but if you don’t feel that you can truly bring up your concerns regarding your physical, emotional, and mental health, that doctor might not be the right one for you. Many of us did not find our partner or spouse on our very first date. I wouldn’t recommend doctor shopping, but if you don’t trust the one you have, ask yourself ‘why?’ and dig deep. Sometimes
we need different doctors for different times in our journeys- we have to have a good gut feeling about the relationship and have good lines of communication to maintain healthy trust.
#2. Be organized with your lupus medication (actually all of your medication!); consider bringing all medication bottles to your appointments, or better yet: bring an updated list to every visit. If your doctor is asking about the name of the medication, and you just know you take the little purple pill that makes you feel sick, if you are not talking about the same thing, there will be miscommunication! Trust me- your doctor has no idea what color each medicine is!
#3. Consider medication boxes or a pill-packer pharmacy: many lupus patients require more than one medication. A pill box that helps dispense a week of medication and divides things into morning and evening doses (or more) can help simplify things. Some pharmacies (like Pill Packer or AccupacRx) will package them for youthis is called “MOT” medication on time (sometimes without a fee, sometimes for a fee). This makes it a little more complicated to know which pill is for what and when medication is changed. However, it might be easier for patients who
take a lot of medication and don’t have the time to organize a medication box themselves.
#4. Be informed about your medications: the more you know about your disease, the better! Knowing exactly what your medicine does to help your lupus may help you remember its importance and probably make it easier to take and tolerate any unwanted side effects. If a person is taking lisinopril for lupus, but doesn’t feel any different, it’s not easy to remember or want to take it. But, if I explain to you, “This lisinopril helps your kidneys hold on to protein and stay strong against lupus hurting the kidney,” it might be easier to remember to take it and WANT to take it- to protect those kidneys! On your medication list- note this: i.e. lisinopril- med for lupus in the kidneys.
#5. Sometimes patients come to me, embarrassed that they have a paper of written or even typed concerns and questions. I love it when they come so organized! I know that they have thought about these issues for a long time and even spent time researching books or on the Internet. Sometimes these are patient visits when I don’t necessarily make the most changes to treatment regimens, but I can help the patient the most!
Answering questions and hearing what the patient is concerned about helps a person on their journey more than making medication adjustments, which might fall to the wayside if a person doesn’t understand the importance of what is going on.
#6. Consider a lupus journal: I’m a big fan of journaling for mental health, something amazing happens to an anxious thought when the brain puts that worry on paper. This doesn’t necessarily need to be a daily thing, but writing down issues on the calendar when a symptom starts or you notice a change in how you are feeling, can help give a better history of what’s going on with your body. The next visit with your doctor when you have drawn up your list of questions and concerns, go back to your journal so you can say exactly when something started or how long it’s been going on. This will give your lupus doctor a better history. [There’s a secret kept in medical school: 80% of problems can be figured out with history and physical exam (the story the patient tells and maybe what we see on the body in the clinic.) We don’t even need blood tests, x-rays, or CAT scans to figure the rest out! The better the history a patient can give, the easier it is for the doctor to figure out what is going on!]
If you would like to share your story with lupus and help inspire others please email: Alex@lupusgreaterohio.org
On this episode Suzanne sits down with Ashley Houston. Ashley’s sister, Dontasia Nevins, passed away in January of 2023 from complications of lupus. Ashley discusses her sister’s battle with lupus, keeping her memory alive, and what she does to raise awareness for lupus warriors!
For this month’s episode we wanted to share Dr. Van Warren’s presentation from our Passport to Better Health event in April. Dr. Warren provides a broad overview of lupus and answers patient questions.
Kelly Perhach stopped by the office to provide a recap of her recent Links Fore Lupus golf outing. Kelly holds many fun and unconventional fundraisers throughout the year to raise money for our chapter and we are beyond thankful for all of her efforts!
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.
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.
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 felt chest pain while taking deep breaths?
Have you had a stroke or heart attack?
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.
Please turn over this page for more information.
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 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?
Greater Ohio Chapter Programs Available:
Let's Talk About It Webinar Series
Living with Lupus Magazine
Lupus Night Light Blog My Lupus Living Room Podcast
Patient Navigator Program
Educational Summits & Classes
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.
Lupus Foundation of America | 2000 L Street NW, Suite 410 Washington, DC 20036 | 800.558.0121 202.349.1155 | www.lupus.org |
Support Groups Local State Advocacy Use this QR code to access program & educational resources. Lupus Foundation of America Greater Ohio Chapter 12930 Chippewa Rd, Brecksville, OH 44141 | 1 (888) NO-LUPUS (440) 717-0183 | LupusGreaterOhio.org |
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.
Mackenna Willis Creative Design Manager
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.
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.
Community Outreach Coordinator
Aletha@lupusgreaterohio.org
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
chapter continue to grow and help lupus patients for years to come.
Rita O. Piccin, BS, ND, RN
Lead Patient Navigator /Outreach Coordinator
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.
www.lupusgreaterohio.org
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.
GET IN TOUCH!
Lupus Foundation of America, Greater Ohio Chapter 12930 Chippewa Road, Brecksville, OH, 44141
Phone: (440) 717-0183 Toll-free: 1 (888) NO-LUPUS FOLLOW OUR SOCIAL MEDIA @lupusgreaterOH
