WITH LUPUS
Caregiver’s Perspective Pg. 5-7 Law of Attraction Pg.14-16 Lupus and Heart Health Pg. 18-20
ISSUE 8
Living
Suzanne Greetings Everyone, I am thrilled to present an issue of our magazine that shows admiration and appreciation for all those who are caregivers, not only to us lupians, but the world. For some of us, “we can’t even imagine,” what being a caregiver is like. This quote says a lot. “There are only four kinds of people in the world: Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.” – Rosalyn Carter Why author this article? This past winter has been a heartbreaker for myself and my family. The losses were great. The losses for many of you have had equal or greater pain. We can’t even imagine. Many of us became caregivers or needed a caregiver. Fewer were on the sidelines. My phone had a constant flood of calls from people who shared so much sadness in their lives. Many of them became caregivers unexpectedly overnight. During this recent surge of the COVID pandemic, many families found themselves caring for their loved ones at home. Those who had family in nursing homes or retirement homes brought them home to care for to protect them from the virus. Others had the virus in their homes that just kept bouncing off each family member. Too many lost loved ones. All of this was happening so fast and so unexpected. Yet, you rose. Typical of us lupians we adjust, adapt, and conquer. Usually during February, I like to write about love and romance. This year things are so different and there is so much sadness I am fearful that love and romance are overshadowed by all the grief. Still, I look at the love that filled our lives during these challenging times. The reality is that in order to be a caregiver you must first have love in you that you are willing to share unconditionally. This love you are willing to give of yourself to someone else. I wanted to take a look at this kind of love. My sister cared daily for my 98-year father. She would encourage myself and my siblings to visit more often, because she felt we were missing this wonderful part of our father’s journey. Although challenging to care for him. It was rewarding and fulfilling for her. He depended on her. The love he had for her we can only imagine. My brother-in-law cared for his wife for the past 19 years (kidney cancer). He is an angel. He knew her every move and beckoned to her every need. He was like a robot. This robot (the steel man) had a giant heart. You looked at him and all you saw was love. It was like magic. A true love story. We lost both of them just before Christmas this year. Life is like a ripple in a stream. It comes and goes. But the love and the memories they left continue to flow throughout the lives of those left behind. The love of the caregiver is priceless. Yes, some of us pay for caregiver service, but for many more it is a family member, a friend, and often a stranger. As people living with a chronic illness, how do we respond to those that care for us? I want you to take some time and think about the people that lift you up on a daily basis. How do we see them? How do we treat them? Do we truly know what it takes to be a caregiver and do we even care? Do we take them for granted? What are our expectations? Are we demanding? Do we know what sacrifices they make to care for us? Are they even capable of being a caregiver? The list of questions can go on and on. I am a seasoned professional patient. Through my journey with lupus there were many peaks and valleys. Looking back at my worst flare years, I had a host of caregivers. Many included my family, even my children. There were many hospitalizations along the way, I had many needs. At one point I was in a rehabilitation facility for two months.
There is not enough room in this magazine to reflect on all of it, although some are entertaining and others frightful. Someday we will meet for coffee and have a good laugh or a good tear. The point is, I did not stop to even think about these precious, priceless people who took their time to care for me and fill my needs. It saddens me now to actually recognize this. I only focused on me, I lost my love of humanity. For decades I have sat with thousands of my fellow lupians, their family, and friends. I did see the caregivers. I did see the lupians. I did see the reality that I was not the only one lost in humanity. All too often I take these caregivers for granted and we have huge expectations of them. Thankfully here comes that thing we call LOVE. The caregivers allow those they care for to behave poorly. They know the need is real. They know we need care. They are empathic to our situation. They know that with their care things are better and so they give of themselves because they love us. I feel remorseful and I feel I should lead all of us that have caregivers to be better at humanity when it comes to those who care for us. That is why I will be sharing my fondness of caregivers to you throughout the year. This chapter will have a class for caregivers, and we will remind our constituents that we can be better aware of those who give us care and to extend gratitude and respect to these priceless people in our lives. Let us all try and do a better job at returning the love we receive to those who are caregivers to us. Please really give thought to this and if you own it like me then let us make changes together. Remember, time whether it is yours or someone else’s is something you cannot get back once it happens. So, guard your time, use it wisely, and respect others too. No matter what you do in life, what you have or who you are, spend your time wisely. This magazine is filled with wonderful stories of this type of love. I hope they inspire you. Enclosed are a few quotes I hope you find encouraging. As always, during your lupus journey you are not alone, we are here for you. With love, Suzanne “No matter what you’ve done for yourself or for humanity, if you can’t look back on having given love and attention to your own family, what have you really accomplished?” Lee Iacocca, businessman “Family is not an important thing. It’s everything.” — Michael J. Fox, actor “It is not how much you do, but how much love you put in the doing.” — Mother Teresa “Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” Lao Tzu, philosopher “Caregivers attract caregivers and live in a community of love. They are energized by their caring, fulfilled, and they love life.” Gary Zukav, author
Suzanne Tierney President & CEO Lupus Foundation of America, Greater Ohio Chapter
CONTENTS
5-7
Pg. 1 - 2 Letter from Suzanne Pg. 4 ExactCare Pg. 5-7 Caregiver’s Perspective
Caregiver’s Perspective
Pg. 8 Walk to End Lupus Now® Pg. 9 New Programs Pg. 10-11 Get Involved and Ways to Give Pg. 12-13 CDC Be Fierce & Take Charge Pg. 14-16 The Law of Attraction: Seven Steps to Manifest Your Destiny by Leslie Vizcarra-Tierney Pg. 17 Where Should I Go For Care? Pg. 18-20 Lupus and Heart Health Pg. 21-22 Research News Update Pg. 23 Podcast and Blog Pg. 24-25 Could You Have Lupus? Pg. 26 Staff Page
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Research News Update
1416 The Law of Attraction
1820 Lupus and Heart Health
Lupus Foundation, Greater Ohio Chapter, Announces New Partnership with ExactCare Pharmacy Limited supply of hydroxychloroquine (Plaquenil) available to lupus patients at no cost It is our pleasure to announce an exciting opportunity for lupus patients in Ohio. We have partnered with ExactCare Pharmacy to offer a limited supply of hydroxychloroquine (which you may know by its brand name of Plaquenil) free of charge. Delivery is included! Why is this program being offered? You may remember that state and local governments began acquiring hydroxychloroquine in late March of last year. This was due to speculation that the drug could be effective in treating COVID-19. After numerous clinical trials, however, the Food and Drug Administration determined in June 2020 that hydroxychloroquine does not help with coronavirus prevention or recovery. This left many states, including Ohio, with a surplus supply.
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How do I receive the free hydroxychloroquine? As our partner pharmacy, ExactCare will be dispensing the hydroxychloroquine. They have set up a special phone line to assist lupus patients. Simply call 732-994-7851 and a pharmacy representative will walk you through the process. In most instances it will be easier to have a new prescription sent to ExactCare, and this medication will be provided to you at no cost and will be delivered to you. If you are taking multiple medications, you may also choose to get all of your medications through ExactCare. How long is this free medication available? This program is providing a limited supply of hydroxychloroquine on a first-come, first-serve basis. If you are interested in receiving the medication through
this partnership, we suggest calling ExactCare sooner rather than later. Who is ExactCare? ExactCare is our partner pharmacy for this program. ExactCare is headquartered in the Cleveland area and specializes in helping people who take multiple medications manage chronic conditions. Their services make it easier for people to manage their medication routines and stay on track with their health. If you take multiple medications as part of your lupus treatment, you may be a good fit for their enhanced pharmacy services. The Lupus Foundation of America, Greater Ohio Chapter, Inc. strives to provide accurate information in a timely and efficient manner. Reference in this publication to any specific product or service is for information and convenience to the public and does not constitute endorsement or recommendation by the Lupus Foundation of America, Greater Ohio Chapter, Inc.
LUKE LIPTAK: CAREGIVER’S PERSPECTIVE *The views expressed in the following stories belong to the content creators and are not the expressed opinions of the LFA, GOC, it’s affiliates, or employees.
My story about being a lupus caretaker is also the story about my realization of the reality in which I exist. Many years ago, I was employed at a local hardware store. One day as I walked into work my eyes gazed upon the most beautiful girl I had ever seen. She was standing at the customer service desk, her long blond hair gently blowing in the wind from a nearby fan. Although nervous and intimidated to talk, I approached her and we became friends. I didn’t know it back then, but my life was about to change forever. Like any other young couple in love, we were inseparable. She was all the same things I was; athletic, fun, a party animal. We would hike, camp, ride bikes, and spend time on adventures; our lives were going great! But as time went on our adventures became smaller and less active. She began complaining of soreness and muscle pain. Her joints began to bother her, and she was getting tired more often. She decided to see a doctor who identified signs of arthritis. Shortly after that she developed a blood clot, which led to her being diagnosed with lupus.
As much as this was a shock and surprise to her, it also was for me. Both her and I had never heard of lupus. We did not understand what it was or what caused it. I personally had no experience with any type of disease in my life at this point and thought it would just go away, like the common cold. But it didn’t go away. We were in the hospital every month and our lives were turned upside down. As our frustration became unbearable, one of the most important events in our lupus journey was the discovery of The Lupus Foundation of America. Their support group was eye opening in so many ways. Not only did I learn what lupus was, this is where I truly realized that I would have to be a caretaker.
At first, being a caretaker was something new and exciting. I embraced this new life we had together and moved forward with a stiff upper lip. As her caretaker I made sure she took her medicine, ate healthy meals, exercised, and had enough sleep. When the lupus would flare up, I took care of getting her to the hospital, and comforted her in times of pain. When she had a good day, we would take full advantage of her health and go on adventures again. But when the bad days came, we made sure to rest and recover. Thankfully her lupus went into a mild remission and was under control through medication. Eventually we got married and had two kids, but once again lupus reared its ugly head, becom-
"I am so grateful for my husband and caregiver. He takes the time to have “medical” conversations with me, encourages me to take care of myself so I can avoid flares, gives me my Benlysta injection each week, and takes over family responsibilities when I “just can’t.” He is not only my caregiver, but my greatest champion. I am at my best because of him." - Adrienne, lupus warrior LIVING WITH LUPUS MAGAZINE
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ing worse than before. Early on in our battle with lupus I could have handled it without a problem. But now, while raising two young children, working full-time and going through issues of my own, the caretaker in me was deteriorating. During that short time of remission, I became complacent, prideful, and selfish. Now that the lupus was back I thought to myself, “It’s not fair! She doesn’t deserve this! Why won’t this lupus go away? I need to live my own life” We were in a dark place and being a caretaker was becoming more of a chore that I was tired of doing. As lupus tightened its deadly grip, darkness and depression clouded our world. Even though we had come so far in our journey, conquering flare after flare, we were at our breaking point. We still did not understand why this was happening or how this could be. And just when it seemed like lupus was winning the battle something miraculous happened. This mir-
"My sister was diagnosed with lupus when I was very young and growing up and helping with the role of caregiver was a hard task, but I knew I had to stay strong for my sister." - Lillian, caregiver
acle did not come in the form of medicine or even a cure, but in a relationship with God. It was at this time our darkness was turned into light and our eyes were opened to the truth. We now understood why she has lupus. We now understood how this happened. It all made perfect sense. We discovered that the curse of lupus is part of our existence. In fact, our entire existence is under a curse. Pain, disease, sickness, suffering, and ultimately death are all a result of sin. For so many years as a lupus caretaker I did a wonderful job at taking care of my wife’s physical problems but neglected her spiritual problems.
Although lupus is real and terrible, it is temporary. Now as her caretaker, I still provide her with physical support, but I also remind her that even though the curse of lupus is with her every day, God, the ultimate caretaker, provides her with everything she needs. For He has conquered lupus, pain, sickness, and even death. Being a lupus caretaker is one of the best things that has ever happened to me. Because of my first-hand experience with this disease, I have now become aware of the reality in which I exist and the One who can save me from it.
TINA AND DAVE: CAREGIVER’S PERSPECTIVE Who is Taking Care of Who? Living with a chronic illness is not always awful. Sometimes it’s just normal. Sometimes you feel great. Sometimes it’s painful, scary, or exhausting. So, when there are two of you in the house living with similar illnesses, then who is taking care of who?? I have lupus SLE and have for 10 years. I am lucky because 80% of the time the meds I take work to keep me moving, working, happy, and healthy. However, when my flares start- always out of the bluethey really hit. Myocarditis. Cerebritis. Pericarditis. Chilblains. To name a few. Then hospital, recovery, time off work. Yuck! See, I want to save the world and when I can’t it really irks me. 6
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So, when that happens Dave, my husband is the one that keeps me calm, rested, and lets me know it’s ok if I take off my cape once in a while. Whether I am in a flare or not, he always tells me to slow down, relax more, and his famous “you are not responsible for everything and everyone.” He takes care of me in many subtle ways. He does the most important things. He hangs out with me, takes care of me, (oh and I can’t forget he does the dishes and laundry by choice, got to love that!), and never makes me feel bad if we have to miss something we wanted to go to. He’ll say, “who cares, there’s always another thing.” He keeps it in perspective, and I appreciate that. I can start to go down a rabbit hole of feeling guilty for holding
him back from going out, but he doesn’t let me go there. By the way, my husband Dave, who is my very best caretaker, has Ankylosing Spondylitis, which is a painful chronic form of arthritis that causes widespread inflammation and causes your bones to fuse, which can greatly limit mobility in your spine, hips, shoulders, etc. It is very painful. He’s had double knee replacements, both shoulder bones un-fused with surgery, a large heart aneurysm fixed (that was the scariest!), cancer twice, and someday you can ask me about the caterpillar that almost did him in. Truly. (Way too long and crazy of a story for this article.) However, if you have ever met my husband, unless you know his
story, you wouldn’t guess any of it. He is the best example of being his own best/and worst caregiver. He doesn’t let anything stop him. He works in pain every day and doesn’t mind. He smiles and has a joke or a funny comment for every situation. But he also doesn’t refill his pills, make his doctor’s appointments, get his blood work done, etc. So that’s my job and I don’t mind.
"My friend Lucille had lupus. She was a charismatic lady who was full of life in spite of her challenges. When she had flares, she became a very needy person. Before my eyes, I would see an instant transition from wellness to illness. I eventually became her caregiver. Most recently I shared with Suzanne that it was a silent challenge. When it came between who would get lunch or dinner there was no question that her needs were filled first. I did work full time I do not think most people think about their caregiver. Still, I would not have had it any other way."
When Suzanne asked me to ask Dave to write an article about his view of taking care of someone with a chronic illness, I said, “I’m not sure who really takes care of who?!” She said, “write that!”
- Ann, caregiver
Bottom line, we don’t expect the other to “cater to us.” Honestly
"I feel very blessed to have a husband who always provides for my needs, especially when I am not feeling well." - Kathy, lupus warrior some days we are not sure who is more tired or who needs it the most. So, we both take care of each other and ourselves, and neither of us sits there looking at the other for sympathy. Now empathy, that’s different. We have that in spades for each other. I can literally “feel his pain” sometimes as a spouse with a chronic illness, and I know that he can feel mine. We help each other, but we don’t enable
each other to stay down for long. We push each other back up when it’s time. When one of us is down health-wise, the other takes the wheel without another thought. Then we do everything we can to get them back to copiloting the wheel with us. Speaking of wheels, we have quads we love to ride in the woods. We love being in the lake on our jet skis, jumping off the pontoon, and at our family’s cabin with friends. Much of our “caretaking” is “taking care” to have fun! We live life to the fullest! Do you know who your very best/ worst caretaker is? You. How would you rate yourself as your own caretaker today if you had to score yourself? Honestly, I’d say I’m a 2/10. Which is a big old flunk. I always take care of myself last. I’ll bet you do too. I am blessed to have some help,
however, I’m going to work to greatly improve my self-care this year. For those out there without chronic illnesses or those who don’t understand your significant other with lupus, try empathy when they are tired beyond belief, have unbearable pain, want to stay home instead of going to a party, are extra nervous about covid as an immune-compromised person. Try empathy. How do you learn empathy? Read about lupus. Really read. Understand everything about their disease. You love them. You both deserve to fully understand the other. I challenge those significant others who are reading this (or hand this to them if they are not). Go to https://www.lupusgreaterohio.org/. You simply cannot feel or truly understand what your loved one feels without knowing. #kNOwLupus
"When I think of my caregiver I realize that it takes a village to care for me. Although I look normal, my looks do not show the lupus challenges that I am confronted with on a daily basis. It starts in the early morning. My husband is my hero. It really takes a lot to get me going. His help allows me to have more time to do the things I love to do. My staff helps me move mountains daily: they are very supportive and conscious of my limited world. My family, I have exhausted through the years. The way they offer care and support is too plentiful to list. All these people who give of themselves so I can be myself. I say thank you. I am sorry for not giving you the gratitude you all deserve. I humble myself to ask for your forgiveness. I will never take your care for granted. Love to my village." - Suzanne, lupus warrior LIVING WITH LUPUS MAGAZINE
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2022 WALK TO END LUPUS NOW
®
We are excited to announce that our Walk to End Lupus Now® will be in a hybrid form for 2022. You will have the option to walk in-person or to walk virtually. We are currently working to secure the date and venue for the walk. We can tell you that the walk will take place during September and will be in Cleveland. Our goal is to keep everyone safe and healthy. We will be requiring participants to wear a mask for in-person walks and to follow all CDC recommendations to ensure that we all stay safe and healthy. If restrictions become mandated close to the walk date, we will reach out to you immediately. We cannot make these walks possible or successful without our volunteers. We will be needing YOUR help to make this walk happen. We endlessly appreciate our past volunteers and we are excited to invite new volunteers into our biggest event of the year. If you have never volunteered before, this is your chance! If you are committed to being a part of our success story, please email us at info@lupusgreaterohio. org.
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Patient navigators are here to assist you. Dealing with a chronic illness like lupus is often overwhelming and sometimes we need help. The LFA, GOC has a team of trained patient navigators that are ready to assist you. To be connected to a patient navigator in your area contact our office at 1(888) NO- LUPUS or email us at info@lupusgreaterohio.org.
Here are some new programs to ask your local patient navigator about:
We have joined forces with Uber Health to provide reliable transportation to your doctor. It is our goal to reduce barriers to care and transportation is one of them. There is no smartphone required! Patients without access to a smartphone or the Uber app will get notifications with ride details by text message or phone call to their landline. Technology should never be a barrier to healthcare. The Uber Health dashboard is HIPPA-supported and was specifically designed for healthcare companies to handle sensitive data, so they can safeguard patients’ information from start to finish. Please contact the office for more information, we might be able to help you with this barrier. There are some limitations and requirements, let us see if we can help. Call 1-(888) NO-LUPUS.
We have partnered with BetterHelp to support you and your wellbeing by providing you with easy and convenient access to professional therapy online. BetterHelp is offering one free month to our constituents. You can sign up today by visiting our website at https://lfaohio.salsalabs.org/ onemothofbetterhelp/index.html. If you have any questions about the program or you would like assistance registering give us a call at 1(888) NO-LUPUS. Just like seeing a counselor in a clinical setting, BetterHelp allows you to connect with your therapist in a safe and private online environment. All counselors are licensed, accredited professionals. Anything and everything you share is confidential. Access your private chat room on any device with an internet connection at any time. Communicate with your therapist as often as you want and whenever you feel it’s needed via text, talk, phone, & video.
Strategies to Embrace Living with Lupus Fearlessly (SELF), a new online self-management program designed to help people with lupus build and enhance skills in four pillars of lupus self-management: managing symptoms, managing stress, managing medications and working with their healthcare team. You can explore this program more on our website by visiting this page. https://www.lupus.org/ resources/self?utm_source=Chapters
Key features of the platform include: - SELF Activity Center This activity portal provides access to resources, tools, and activities that are tailored to the user’s specific needs and can be completed at their own pace. - Symptom Tracker Users can track and make notes about their symptoms daily, so that they can recognize patterns. - Medication Tracker Users can keep track of all their medications in one place. - Journal Users can take notes at doctor’s appointments, jot down questions to discuss at future appointments, or simply write about their mental and physical health. MAGALIVING WITH LUPUS MAGAZINE ZINE
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Stay up-to-date on everything we’re doing by joining our mailing list. You will receive a monthly newsletter, support group reminders, Walk to End Lupus Now® updates, research news, and more. Sign up now: lupusgreaterohio.org/stay-informed
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Text “NOLUPUS” to 833-4490800, complete your contact information, and be sure to opt in to receive important lupus updates directly to your mobile device.
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.
Get Social Join us on our social media platforms to stay connected: lupusgreaterohio.org/stay-informed/ get-social Instagram.com/lupusgreaterOH Facebook.com/lupusgreaterOH Twitter.com/lupusgreaterOH
Become a Member One-year: $25 Lifetime: $200 lupusgreaterohio.org/get-involved
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If you are interested in hosting a third-party event, reach out to us for our official guidelines and an application.
Advocacy Each year, the National Lupus Advocacy Summit brings together the lupus community to pursue a collective vision of a world without lupus. In
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addition, we help to ensure there is a cohesive voice heard in Washington D.C. that ensures the lupus agenda is at the forefront of the legislature. This year’s National Lupus Advocacy Summit will be held on June 26, 27, 28 in Washington D.C. To participate or for more information, please visit https://bit. ly/3pbE1Zh. We invite you to register to be a lupus advocate in Ohio. Our current initiative is to keep lupus in the state budget for the new biennium. Much of the educational and support programming produced by the LFA, GOC over the past two years has been a direct result of the funding provided by the state of Ohio and the Ohio Department of Health. It is imperative that we let Ohio’s leadership know the importance of keeping lupus in the public health agenda. lupusgreaterohio.org/ get-involved/advocate
WAYS TO GIVE Traditional • Checks Please make checks payable to the Lupus Foundation of America, Greater Ohio Chap ter, and mail them directly to 12930 Chippewa Road, Brecksville, Ohio 44141.
• Combined Federal Campaign CFC #51890
Other • Amazon Smile • Donatestuff.com Schedule a donation pickup of your gently used goods and pick the LFA, GOC as your charity. • Leave a Bequest You can include the LFA, GOC in your will to support the mission beyond your lifetime. • Give the Gift of Life Insurance Name the LFA, GOC as a sole or partial beneficiary.
Investing • Stock or Other Securities • Life Income Plans Pooled Income Fund Charitable Remainder Trusts
• Credit Card + PayPal Fill out the online donation form or call the office.
• Creating Healthier Communities CHC #9963
• Facebook Fundraisers • Instagram Stories
• United Way Campaigns
For more information on ways to give, please visit lupusgreaterohio.org/get-involved/donate or contact the office.
In Honor of • Memorial Donation • Tribute Donation
Through Your Job • Employer Matching Gift Program Ask your employer if they match charitable contributions made by their employees.
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Be Fierce. Take Control. to Raise Awareness of Lupus. While many people have heard of lupus, few know anything about the disease beyond its name. Lupus is a lifelong autoimmune disease that is most common in young women. It can cause inflammation and damage to any part of the body, causing symptoms like joint pain, fatigue, and skin rashes. Because these symptoms are also common for many other medical conditions—and symptoms show up differently for everyone who has lupus—it can take years to receive an accurate diagnosis and begin proper care. During that time, lupus continues to cause irreversible damage to the body. The American College of Rheumatology (ACR) and the Lupus Foundation of America (LFA) wanted to change that and minimize the impact of lupus on the lives of young women. They’ve teamed up to launch the Be Fierce. Take Control.TM campaign to raise awareness of lupus, its symptoms, and how to take the next step if they are experiencing symptoms. The campaign encourages African American and
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Latino women, who are 2-3 times more likely to develop lupus, to take control of their health, the way they run the other important areas of their lives, and not ignore it if they haven’t been feeling their best. The campaign website, befiercetakecontrol.org, houses a number of resources to help women take control of their health: • Resources about lupus, its symptoms, and frequently asked questions • “Could it be Lupus?” interactive questionnaire that will help women figure out what to do about their symptoms • Symptom tracker for keeping track of symptoms over time • Guide for preparing for a healthcare provider visit We don’t think anyone should wait YEARS for a diagnosis. The sooner someone is diagnosed, the sooner
they are on their way to managing their symptoms and avoiding the potential for long-term damage to their health. That’s why we’re here to help and provide the information and resources you need to take control of your health. You can help spread the word about Be Fierce. Take Control.TM by sharing the website and using #BeFierceTakeControl on social media. By sharing, you are becoming a vital partner in driving further awareness about this mysterious disease to those who need it most. befiercetakecontrol.org befiercetakecontrol.org/es
This program was supported by the Grant or Cooperative Agreement Number, NU58DP00690, funded by the Centers for Disease Control and Prevention, in partnership with the Lupus Foundation of America.
“Love that it gave me tools to use and not just an article to read. I printed a tool to track how lupus is impacting my life and a guide about developing my ‘elevator speech’.”
Take Charge is a weekly education email series for people with lupus, including those recently diagnosed. Each week for 12 weeks you’ll get an email from our Health Educator Specialists with tips and resources to help you better manage lupus. With Take Charge you’ll gain knowledge and skills that can help you: • Explain to others how lupus affects you • Stick with your treatment plan • Find and ask for the support you need • Make the most of your doctor appointments • Identify and track your lupus symptoms • Cope with lupus and its day-to-day challenges
Subscribe Lupus.org/TakeCharge This program was supported by the Grant or Cooperative Agreement Number, NU58DP00690, funded by the Centers for Disease Control and Prevention, in partnership with the Lupus Foundation of America. MAGALIVING WITH LUPUS MAGAZINE ZINE
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The Law of Attraction:
SEVEN STEPS TO MANIFEST YOUR DESTINY There are several books you can read to discover the thought process behind the law of attraction. You can even watch a Netflix documentary called The Secret. Doing a little research on this topic can help guide you to start making changes in your own life. Have you ever thought to yourself that you wish you had more friends? More money? More time? Better health? These are questions many people wish for but do not know how to put action behind these thoughts. How do you attract what you want? The first thing you need to do is stop interfering with achieving your own success. Remove the negative thoughts you place in your mind from past experiences. If something did not work out, it does not mean it was a complete failure. Rather, look at the past experience as a lesson learned. Examine the situation and note what not to do. To begin the seven steps are: 14
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1. Decide what you want 2. Ask the universe 3. Visualize your success 4. Add emotion into the mix 5. Practice gratitude 6. Believe and trust the universe 7. Get ready to receive Let’s dig deeper into each step to help guide you through creating what you desire.
Decide What You Want Step one is the base and foundation. Do you know what you want? Take some time to figure out what you desire. People often have a difficult time identifying their goals. Or, they do not make time to think about it. People also tend to work on so many goals that they lose sight of what they desire. Figure out the best time of day you feel the most mentally sharp. During this prime thinking, decide what you want in your life. Think of
things that make you most happy and what you want more of in your life. Decide what you want and start putting action behind it.
Ask the Universe Once you have given yourself enough time to discover what you want, it is time to move to the next step. Organize your thoughts and write out your desires. Review what you’ve written. Set your intention, read them out loud and ask the universe for your desires. It is important that you set your intention and keep it a top priority. Ready your intention out loud every day. Place your written note on your mirror and recite it out loud every day. The more you think about your goal increases the chances that you’ll receive it.
Visualize your Success After realizing what your goal is, work on seeing what your future will be like. Some people may find
Practice Gratitude Being grateful is a simple way to open yourself up to receiving your desires. When you are grateful it shows that you are appreciative of life’s blessing. It will allow you to manifest blessings to continue to follow you in life. When you are ungrateful it blocks you from receiving gifts. Being thankful for life’s blessings no matter how big or small, will create a stronger pathway to you.
Believe and Trust in the Universe
this visualization process difficult. For instance, working on your health can feel like an impossible desire. Take time to focus and visualize what your life would be like free from pain. Or, visualize what it would feel like to have good general health and a healthy lifestyle. With each day of practice, visualizing what you want and living out your dream becomes your reality. Your imagination comes to life. But to achieve this, you must see it first.
Add Emotion Keep in mind that what you are working toward is all about you
and your desire for your future. If you have no emotion tied to your desire, then ask yourself what are you working towards? Your desire should energize you. It should make you feel excited when you visualize yourself living the life you want. The emotional connection to a goal is important. This connection sends out a message to the universe. It establishes your desire for a goal to become reality. Once you can see and feel your goal, the next step is to create the emotional bond to your thoughts. Then getting ready to receive what you desire.
When you do not believe and trust in yourself, you undermine the universe. When you have conflict in your own beliefs how can you trust the process? Believe in yourself. Trust that good things follow you. Do not limit your belief in yourself. Remove negative thoughts and patterns because they are only blocking you toward meeting your goals. Believe in the steps and trust that the universe will provide you with everything you need.
Get Ready to Receive To completely manifest your goals and the life you want, you must complete the final step. You must be ready to receive all that you are asking for. Any past experience that does not allow you to complete your goals you need to let go. For example, past mistakes that you have made in previous relationships. You need to clear that space before you create a new one. This practice is both a physical and mental act. Remove what does not belong and allow yourself room for growth. Once you create space and
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let go of old mistakes, you create the space to bring in new, healthier goals.
Get Started and Share it If you believe, you can achieve it. Work around your limitations and find solutions to get what you want. Are you wondering if this works? There is no better way to find out and commit to the process and find out what you are capable of achieving. You deserve everything you dream about.
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To start working on what you truly desire, creating a vision board is a helpful tool. There are several ways to create your vision board. A free tool you can use is Canva. Visit Canva.com to sign up and work on your vision board. Or you can go old school and physically cut and paste pictures on your homemade vision board. This chapter would like to help you develop a positive thought process. Share your vision board with family and friends.
Please feel free to share your vision board with our chapter. We have Patient Navigators throughout the state that would like to connect with you. Sharing your vision board with others should feel exciting. Visit https://www.lupusgreaterohio.org/find-resources/ find-a-patient-navigator/ to connect with a local Patient Navigator in Ohio.
Where Should I go for Care? Primary Care
Express Care Online
Primary Care
Call your primary care provider (PCP) if you have any new health concerns. They know your health history best. Most offices offer same day appointments. See your PCP for wellness visits, sports physicials, or to monitor any chronic health conditions.
See a provider live within minutes from the comfort of your own home (or work!) using your smartphone, tablet, or laptop. Allergies (seasonal) Asthma (adults only) Back strains and sprains (adults only) Bronchitis (adults only) Conjunctivitis (pink eye) Cold, cough, & flu symptoms
Minor burns or lacerations Painful urination (adults only) Rashes Upper Respiratory illness Urinary tract infections (adults only) Acute Vaginitis (Adults only) Acute cystitis (adults only)
Keep any regular appointments your PCP recommends!
Patients 2+
Express Express CareCare When you should head to express care: Cold, cough, and flu symptoms, viral infections Sinus infection Earache Sore throat Conjunctivitis (pink eye) Skin rashes (ringworm, poisoin ivy, shingles, scabies, impetigo) Minor aches and pains (without serious injury) Headaches Urinary tract infection
Sexually transmitted infections (age (15+) Nausea, vomiting Diarrhea Minor injuries (sprains, strains, minor joint pain) Minor burns Skin injuries not requiring stitches Sports physicals (ages 13+)
Express Care is not the right choice for wounds needing stitches or excessive bleeding!
Patients 2+
Lower-cost option (most insurance accepted)
Low-cost, out-of-pocket option (Insurance may cover)
Emergency Department When you need to go to the Emergency Department: Accidents (falls, car crashes) Chest pain coughing up or vomiting blood Drug overdose Fever Head injury Injuries caused by violence & major trauma Life-threatening conditions
Loss of consciousness Poisoning Severe, persistant abdominal pain Severe burns Severe headaches Shortness of breath Stroke symptoms Suicidal feelings Uncontrolled or excessive bleeding
The emergency department is a busy place! Longer wait times are common. If your condition is not life-theatening, know that your insurance company could deny payment. Consider express care or call your primary care physician's office and ask for a same-day appointment.
In an emergency, call 911 or go to the nearest emergency department.
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LUPUS & HEART HEALTH Niharika Sharma MD Rheumatologist | Akron General Cleveland Clinic
INTRODUCTION Lupus is a multi-organ autoimmune disease, commonly affecting young women of childbearing age. Classically, the involvement of kidneys (lupus nephritis) led to a more severe course in the disease. However, with the advancements in the diagnosis and treatment of lupus, kidney related complications have lessened. In fact, the involvement of heart and vascular systems have become prominent and often lead to increased suffering in lupus patients. Both stroke and myocardial infarction (“heart attack”) occur more frequently in premenopausal women with lupus compared with their counterparts. This makes up 30% of premature deaths in the first 5 years after diagnosis of lupus. The prevalence of coronary artery disease in lupus patients
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is 10-fold higher as compared to the general population and 50-fold higher in young women of childbearing age. CLINICAL PRESENTATION Lupus can affect the heart in several ways, pericarditis, or inflammation of the outer lining of the heart being the most common. Approximately 1 in 4 patients with lupus develops symptoms of pericarditis
in their lifetime. There can be involvement of the heart musculature (myocarditis), heart valves causing leaky valves. Patients can have increased heart rate, chest pain, decreased exercise tolerance and shortness of breath. Patients with lupus are advised to be extra vigilant about these symptoms and receive medical care at a timely fashion. Investigations like laboratory tests, chest x ray,
EKG, Ultrasound of the heart (Echocardiogram) can be very helpful and widely available. At times, more elaborate tests like cardiac stress test or cardiac MRI are required for the diagnosis. RISK FACTORS It is important to understand that traditional risk factors for heart diseases like tobacco use, male gender, elevated blood pressures (hypertension), elevated cholesterol (hyperlipidemia), and obesity are prevalent in patients with lupus. But having said that, lupus itself can increase the risk of heart diseases because of inflammation, especially in younger females. Patients who have had lupus for a long time and had very active severe disease are at increased risk for heart diseases. These patients often have several symp-
toms due to involvement of various organ systems like kidneys, joints, lungs, brain, blood clots etc. They are often treated with prolonged courses of high dose prednisone which can cause weight gain, hypertension, hyperlipidemia and hence increases the risk for heart diseases. A previous history of blood clots puts a lupus patient at higher risk of having heart attack and stroke. Although men represent a small minority of patients with lupus, male sex is a strong risk factor for coronary artery disease in lupus. LUPUS AND PREGNANCY In a pregnant lupus patient, your rheumatologist will check antibodies SSA and SSB which can potentially increase the risk of having the newborn with lupus (neonatal lupus). New-
borns with neonatal lupus can have a body rash and electrical conduction defects in the heart (complete heart block). Close follow-up during pregnancy with rheumatologists and highrisk obstetricians is of utmost importance. Fetal echocardiograms are done routinely in high-risk pregnant mothers to detect heart abnormalities in the baby during the later period of pregnancy. ANTIPHOSPHOLIPID ANTIBODIES Antiphospholipid antibodies syndrome (APLS) in particular can greatly increase the risk of blood clots, heart attacks and stroke. APLS can damage heart valves causing them to be leaky. Pregnant women with APLS are treated with blood thinners during pregnancy.
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PREVENTION AND TREATMENT In common practice, a rheumatologist would like to see a lupus patient every 3-6 months in office for history, physical exam and obtaining labs. This helps to monitor and control the disease which is important to prevent cardiovascular complications. Hydroxychloroquine is comonly used in the treatment of lupus and is reported to be beneficial in reduction of cholesterol levels and incidence of blood clots. Use of hydroxychloroquine in expecting mothers can decrease the recurrence of neonatal lupus. When necessary, rheumatologists often use additional medications like aza20
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thioprine, methotrexate, belimumab and sometimes stronger medications like rituximab and cyclophosphamide in order to keep the lupus symptoms under control. Regular health check-ups with your general practitioner can help detect high blood pressure, blood sugars or cholesterol levels. We often spend time in counseling patients for tobacco cessation since we see a much higher risk of heart attacks and stroke with tobacco use. In the current era of pandemic, with a large number of the population working from home, or struggling with stress and depression, increased weight
gain can lead to more and more cardiovascular diseases. Keeping the body mass index (BMI) in the normal range of 18.5-24.9 is advised. Therefore, regular exercise, a healthy balanced diet and adequate restful sleep are keys to a healthy heart. Niharika Sharma MD Rheumatologist Akron General Cleveland Clinic
RESEARCH NEWS UPDATE Encouraging Trial Results for Potential Lupus Drug Iberdomide In a Phase 2a clinical trial, the drug iberdomide was found to be safe and effective for the treatment of lupus. With increasing doses, participants’ lupus disease activity improved while negative reactions were uncommon and mostly mild. The study included 17 people with lupus, and researchers assessed their symptoms and tolerance of the treatment. Some people received a placebo (an inactive treatment) while others received differ-
ent doses of iberdomide. At all dose levels, participants benefitted from improved disease activity compared to the placebo group and their baseline disease measures. Blood levels of B cells (white blood cells that attack invading viruses, bacteria and toxins) and markers of inflammation decreased as treatment dosage increased – good signs that the treatment is working.
included nausea, diarrhea and upper respiratory tract infections. More moderate to severe reactions occurred in the highest dose groups. Iberdomide shows early promise as a potential therapy for lupus, and the latest trial results indicate its worth continued investigation.
The most common negative reactions to the treatment LIVING WITH LUPUS MAGAZINE
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New Insights into Long-Term Benlysta Treatment in Lupus Data from people who continually treated their lupus with Benlysta® for several years indicate the drug remains safe after long-term use. Researchers looked at changes in two key biomarkers over time: B cells and Immunoglobulin G (IgG), two indicators of immune system activity. After 5-6 years of continued Benlysta use, both B cells and IgG decreased, and these reductions were not associated with increased
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infection risk or any significant changes in the drug’s safety profile. Additionally, researchers found that people with elevated baseline levels of naïve B cells (a subset of B cells) were more likely to respond better to Benlysta therapy, while those with elevated baseline IgG levels were less likely to respond well to the treatment and had greater rates of infection. The findings suggest that assessing B cell and IgG levels before
starting long-term use of Benlysta may help healthcare providers better predict how people will do on the drug and their long-term infection risk. To learn more on lupus drug news and about medications used to treat lupus visit our website at https://www. lupusgreaterohio.org/understanding-lupus/news/
LFA,GOC BLOG AND PODCAST We are so proud to bring you our blog, Lupus Night Light, and our podcast, My Lupus Living Room. On these platforms, we talk about a wide variety of topics. We cover things like Lupus and hair, mental health, and patient stories! We want to thank all of our previous podcast guests, including: • • • • • • • • •
Alethe Acree Kari Kepic David Santoli Rachelle Yarnell Kathy Holmes Adrienne Fernandez Margaret Lizotte Ryan Pike Shannon Cabot
• • • •
Lisa Evans Katie Gugle Rita Piccin Allison Fedon
• If you have something to say, we want to hear it! If you would like to be a guest on the My Lupus Living Room Podcast, or a guest writer on our blog, please email us at info@ lupusgreaterohio.org or call us at (440) 717-0183.
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Could You Have Lupus? Lupus is a chronic autoimmune disease that causes inflammation in various parts of the body. The disease can range from mild to life-threatening. Ninety percent of those diagnosed 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. *U 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.
Brain and Nervous System
Eyes, Nose, and Mouth
Have you had a seizure or convulsion?
Have you had sores in your mouth or nose that lasted more than five days?
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 developed irritation or dryness in your eyes or mouth for more than a few weeks? Stomach and Intestines
Heart and Lungs Have you felt chest pain while taking deep breaths? Have you had a stroke or heart attack?
Muscles and Joints Have you had stiff, tender, and swollen joints that feel worse in the morning?
Kidneys Have you been told you have protein in your urine? Have you had swelling in your legs and ankles on both sides at the same time? Blood and Circulatory System 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.
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Have you had unexplained weight loss or abdominal pain or tenderness when your belly is touched?
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Have you had extreme fatigue and weakness for days or weeks at a time, even after plenty of sleep? Skin 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?
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Greater Ohio Chapter Programs Available: Let's Talk About It Webinar Series $GG FKDSWHU VSHFLILF SURJUDPV KHUH Living with Lupus Magazine Lupus Night Light Blog My Lupus Living Room Podcast Patient Navigator Program Educational Summits & Classes Support Groups Use this QR code to access program & educational resources. Local State Advocacy
$OWKRXJK WKHUH LV QR FXUH IRU OXSXV HDUO\ GLDJQRVLV DQG SURSHU PHGLFDO WUHDWPHQW FDQ VLJQLILFDQWO\ KHOS WR PDQDJH WKH GLVHDVH ,QFUHDVLQJ QXPEHUV RI UHVHDUFK VWXGLHV DUH XQGHUZD\ WR GHYHORS QHZ DQG LPSURYHG WUHDWPHQWV IRU OXSXV DQG WR ILQG D FXUH The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable, and devastating diseases, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, we lead the fight to improve the quality of life for all people affected by lupus. 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. RevJTFE 2000 L Street NW, Suite 410 20036 | Ohio 800.558.0121 202.349.1155 | Lupus Foundation of America |Lupus Foundation of Washington, AmericaDC Greater Chapter
www.lupus.org
|
© 2013
12930 Chippewa Rd, Brecksville, OH 44141 | 1 (888) NO-LUPUS (440) 717-0183 | LupusGreaterOhio.org | © 2013
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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 & 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.
Aletha Acree
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!
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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.
Stephanie Holmes
Administrative Assistant 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.
Adrienne Rice-Fernandez
Lead Project Coordinator Adrienne@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.
Kay Adams
Fundraising & Events Coordinator Kay@lupusgreaterohio.org I am a people person and an unrelenting communicator. I talk fast and I like action. I was drawn to the LFA, GOC to work in events and promotions but I also harbor a soft spot for editing and proofreading. I have worked in various aspects of events for a while now and I am excited about the shift to non-profit events and development. Among serving the lupus patients of Ohio, my passions also include, reading, traveling, snowboarding, a never-ending search for the perfect chocolate chip cookie, and loving my dog.
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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 (440) 717 - 0183 1 (888) NO - LUPUS
Instagram.com/lupusgreaterOH Facebook.com/lupusgreaterOH Twitter.com/lupusgreaterOH
