Living With Lupus DR. QUINONES SANTIAGO PGs 6-8
Suzanne I try to live by the mindset that the glass is half full or I try to see the world through rose-colored glasses. Today, I find myself quite challenged by these optimistic tendencies. It has definitely been a year of pivoting. Change is not a comfortable thing for most people. Here at the chapter, we find ourselves constantly changing to ensure lupians are receiving the support and services they need during this “crazy COVID world.” The constant rollercoaster of ups and downs can be exhausting to you and to all of us here. We are trying to meet the needs of those we serve in the entire state of Ohio. We always have to stay true to our mission at the chapter. Remember that the Lupus Foundation of America is the foremost national nonprofit health organization dedicated to finding the causes of and cure for lupus. We provide support, services, and hope to all people affected by lupus. We do this through education, advocacy, awareness, and research programs. This year, we found ourselves approaching these needs through the new virtual world we are all living in. This has become the new normal for many. I must admit we have all been zoomed out and are ready to get back to the normal, in-person world. Interestingly enough this new world has had some great benefits. I love data and details, so I spent time digging deep into the data. (This is my rose-colored lens and my glass half full theory speaking). We were able to reach more people from across the state with these digital pivots for the educational summits, online support groups, Facebook talks, monthly web talks, blog, podcasts, digital magazines, e-newsletters, new patient classes, special projects, and so much more. This was our biggest reach to people impacted with lupus ever in the history of the chapter. Still, I am saddened by this. (Now my glasses are clouded). What about the hugs? What about those we missed who do not have access to the Internet and technology? What about the community we were building? For some of us, our hearts were not in it. So, what do we do? Together, with myself, the staff, our volunteers, and the Board of Directors we want you to know we are committed to our mission. We are striving to continue to be your “boots on the ground” people. We do not ever want to lose that personal touch with all of you. You are the heartbeat of this chapter. So, we ask you to be clear on ways we can help you have a better quality of life with lupus while we fight this horrific interruption of our lives. How else can we best serve you? We strive to be creative, innovative, and efficient during this “crazy COVID world.” Give us your ideas. We need a new shift in our thinking. As a lupus patient myself, I have to look through my rose-colored glasses now. Looking at what last year brought to the forefront of treating lupus. I am thrilled. During this insanity we were able to get new medications for the treatment of lupus. The whole world was upside down and these achievements were monumental for us. Two drugs for lupus nephritis. WOW! A new drug for systemic lupus. Plus, we were able to get the drug hydroxychloroquine for our lupus community in Ohio for free. As we look to the end of summer, it looks like we will not be exiting the “crazy COVID world “any time soon. This brings me back to the glass half empty. UGH!
We have at least 20 patient navigators that will be in place across the state of Ohio. We hope that they will be the much-needed “boots on the ground” people that will provide programs, services, and resources for those that need them. They will conduct wellness calls to check on lupus patients across the state. They will be in place to help you navigate your lupus journey. We are mindful that some people have barriers to our services and other needs for their lupus. The goal is to assist you with those barriers. We hoped to have them include in-person events. The reality is that most likely that will not happen until COVID is under control. The reality is there is much we do not know about COVID and the use of the COVID vaccine and how it will impact lupus. Pay close attention to these issues. Have a conversation with your doctor. This is crucial, especially if you have not yet been vaccinated. I have read various reports and attended many town hall meetings on these issues. Still, the opinion is that it is better to have the vaccine than not. If you have not gotten it yet, PLEASE have this conversation with your doctor. Not all of us lupians are alike, and many take different meds. It might not be a fit for you, but do not make a decision regarding the vaccine without consulting your doctor. For the rest of us. If out and about, please MASK-UP. It is not a solve-all solution, but it will help. Do what you can to protect yourself and those you love. Moving forward, we have much work to do here at the Chapter. Please remember that most of our fundraisers have been halted and/or altered. The Walk to End Lupus Now® is coming up (October 16, 2021), and yes, it is virtual again. We need your help with this! Please rally your friends and family to participate. Many nonprofits will not be able to survive the economic challenges of today. We do not want to be one of them. We can rally together to create the much-needed awareness of lupus and support research from a distance safely. I am going to remain optimistic about what tomorrow will bring. I am throwing out my glass of water and rose-colored glasses. I now have a pitcher of water and green glasses. Change can be uncomfortable and scary, but we’re going to make it effervescent.
Suzanne Tierney President & CEO Lupus Foundation of America, Greater Ohio Chapter
CONTENTS 18
Pg. 1 - 2 Letter from Suzanne
15 -16
Pg. 4 ExactCare Pg. 5 In Remembrance of Terry Janicki Pg. 6 - 8 Dr. Tanya Quinones-Santiago Pg. 9 Walk to End Lupus Now® Why Do You Walk?
GET INVOLVED & WAYS TO GIVE
Pg. 10-13 Laura Biernacki Pg. 14 Jasmine Allen-Stone Pg. 15-16 Get Involved and Ways to Give Pg. 17 CDC Be Fierce Pg. 18 Take Charge Pg. 19 Self Management/ Track your Symptoms Pg. 20-22 The Power of Journaling Pg. 23-25 Enjoying the Summer: Dr. Fernandez Pg. 26-27 Research News Pg. 28 Podcast and Blog Pg. 29 Recap LAM and POP Day Pg. 30 Staff Page
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20 -22 THE POWER OF JOURNALING
TAKE CHARGE
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.
In Remembrance: Theresa Janicki Theresa “Terry” Janicki, born December 30, 1946, in Cleveland, OH, passed away on June 22, 2021. She was a charter member of the Greater Ohio Chapter of the Lupus Foundation of America.
get her down and was always cheerful, happy, and had a positive attitude about lupus and life. She could always be found helping other lupus patients deal with the disease.
As a grassroots organization formed back in 1977, when Terry started here she took on many roles. Back then the chapter was solely a volunteer movement. She took on many roles over the years and was charged with many tasks. For years she served as the newsletter editor, corresponding secretary and first vice president all at once.
Lupus was a roller coaster ride for Terry. Still, she always forged ahead. After her retirement she was constantly challenged with health issues. She fought the good fight. Never complaining. She always had her sister Rita at her side. Rita was a nurse, and I was always impressed with how she rose to help Terry whenever she needed it.
Terry led by example and her passion for volunteerism impressed many. She, along with Dr. Ali Askari, was presented with the prestigious Feldelitast Award from the Lupus Foundation of America. Terry, a lupus patient for 57 years, diagnosed in 1964, never let lupus
Terry loved gardening, cooking, traveling, and knitting. She knitted many baby hats and blankets not only for our countless clambake raffles but for other organizations too. Many of you might remember that the chapter’s major fundraiser was the fall clambake and raffle out in Kirtland, Ohio. Together with the Sagaris family, they were able
to rally hundreds of supporters to join them each fall to raise funds for research. Terry proudly retired from Lubrizol in 2012 after 25 years of dedicated service. Because of her work history with Lubrizol, Lubrizol became a generous supporter of the lupus cause. As I reflect through the years, I think of the limited resources they all had. But still, they forged ahead to make a pathway for all of us today. Without their tenacity and desire to give of themselves for others, we wouldn’t be where we are today. She was a true trailblazer and it was a privilege to be a part of her lupus community. With respect and gratitude for a life well-lived, I say thank you, Terry, yours was a life (although sick and challenged) well lived.
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Dr. Tanya Quinones-Santiago Ar t i cl e “If I could talk to my 18-yearold self, there is much I would educate myself on to better equip myself of the challenges I would encounter on a daily basis in my journey with lupus.”
Ever since I can remember, I have always wanted to help people in such a way that I would have a lasting impact on their lives. Growing up as a pastor’s kid I was immersed in service—service to God, family, the church community, and the world as a whole. If you ask any child what he or she wants to be when they grow up you may hear a plethora of careers ranging from lawyer to doctor to firefighter and so forth. But rarely is it the case that what a child proclaims as a “dream job” actually turns out to be the profession they end up in. I happen to be one of those unique cases. And what is that you ask, a doctor! I have always had a strong desire to impact the health, well-being, and quality of life of those around me. You can say that I was destined to be of service, but never did I imagine that my own life and health experiences would be of service to others. It was my senior year of high school, and I was so excited because I was one of eight students in the city to be selected into the medical careers program. This program allotted for half of the day spent at your high school and 6
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the other half at the local hospital studying anatomy & physiology, pathologies, shadowing doctors and surgeons, and getting an inside look as to what medical school and a career as a doctor would look like. And I was in Heaven! The experience made my desire to become a doctor stronger. And during this time I had decided I wanted to be a pediatric orthopedic surgeon. One thing about me, if I set a goal I will not stop until I achieve it! During the final semester of my high school career, I started to notice strange symptoms occurring in my body. I was fatigued all of the time, no matter how much sleep I got. My fingers and toes would go numb and my joints ached. During that time, we were studying autoimmune diseases and I learned about lupus. The more I learned the more I thought “I may have this.” So, I asked my mom to schedule an appointment with a rheumatologist, and she did. I let the doctor know that I thought I had lupus, and he looked at me and said he would run tests but that I looked healthy. At my follow-up the doctor had a look of shock on his face when
he told me that every marker that they look for in a person with lupus was positive. So, there it was, I was diagnosed with lupus and Raynaud’s phenomenon, given a prescription, and sent on my way. I knew at that point I would not be able to achieve my dream of being a surgeon, you can’t cut if your fingers turn numb. But that did not stop me from becoming a doctor. I went on living my life like a “normal person.” I had flare-ups but kept going as if nothing was wrong with me. At that time, I did not know that a larger percentage of people living with lupus are of minority descent. I am Puerto Rican, but luckily I had access to good medical care. Many minorities do not have this luxury. And even with my good care I did not get appropriate lupus education. I do not feel that was due to me being a minority, but more to the fact that doctors no longer have the time they used to have to speak with patients. Which is why I decided to become a Doctor of Physical Therapy as it would allow me a longer time to really treat and have a more hands on approach
to patient/client management. Throughout college and medical school, I took my medication but did not live as though I had lupus. And that was my greatest downfall. As I moved into my professional career as a Doctor of Physical Therapy, I lacked the ability to ignore my lupus symptoms as I did throughout my college career. Treating patients for eight hours, I would come home to barely make it to the couch to crash. My hands and face were swollen, joints were painful, I couldn’t make a fist, and the ability to maintain my alertness had started to diminish drastically. I was no longer able to hide my symptoms, though at the time I did not realize that that was what I was doing. I mean, I walked for lupus every year, I participated in Lupus Foundation events, I was “involved.” But I did not live my life as a person living with lupus should. At that time my health started to spin out of control. I was on over 20 different prescription medications, many of which were just to treat the side effects of other
medications. I really did not have a medical team, as I did not realize the importance of your physicians communicating with each other. It took a life-threatening pulmonary embolism in my 20’s to cause me to take a long look at my health and what needed to change. In 2011, my husband and I decided to move to Florida. Unlike most people with lupus, my body actually responds better in a hot environment. However, the stress of my job, lack of a good medical team, and pushing myself too hard kept me in a constant flare. Even with dietary changes I just couldn’t seem to get myself on track. Eventually my husband and I decided we wanted to start a family. We went through all of the appropriate specialists and got the green light. In late 2013, I immediately became pregnant. I am sad to say I don’t remember any of it. My body began to see the baby as a threat and my lupus went into full on attack mode. I ended up hospitalized, had
a stroke, couldn’t speak or walk, weighed less than 80 pounds, and I couldn’t even recognize my husband. I started to have seizures due to the scarring from the stroke. Finally, after 60 days in ICU they did a D&C and I immediately started to improve. However, I had a very long road to recovery, not only physically but mentally and emotionally as well. I lost a significant amount of memory, we lost our son, and my husband had to make me fall in love with him all over again, because he felt like a stranger to me. I began to shift my perspective and take a more active role in my healthcare. If I could talk to my 18-year-old self, there is much I would educate myself on to better equip myself of the challenges I would encounter on a daily basis in my journey with lupus. There are 3 key points that I would emphasize: 1. Treat yourself as someone “living with lupus” - It is ok to allow yourself time to rest when your body needs it. Take that nap if you know you have plans later in the evening. Don’t “stack” your day with things to do, you will get things done. 2. Build your dream team - As a patient, it is up to you to build a team of medical professionals that are right for you! And that means it’s ok to “fire” a doctor if he/she is not a fit for you. These relationships are so very important to manage your entire body as lupus affects all aspects of your body that multiple specialists are required to be as healthy as possible. So it is important that you feel comfortable with all members of your team and they act as a team would. 3. Educate yourself - You are your biggest advocate and no one knows you better than yourself. Don’t leave your health solely in the hands of someone else, LIVING WITH LUPUS MAGAZINE
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that people tend to disregard any symptoms that I may have because they say, “well you don’t look sick.” This is a huge misconception our society has, the fact that people believe your symptoms have to be visible to be real. This cannot be further from the truth. Anyone that finds out that I live with lupus and epilepsy cannot believe it. I have learned to take this as an opportunity to educate others and advocate for the millions of people who feel the way I feel on a daily basis.
empower yourself and take control over your health. If I had done these 3 things at the time of my diagnosis I would be in a completely different place and may have been able to avoid many life-threatening situations. But the important thing is that I realized this and know them now, and I practice them on a daily basis. Today, I am not only living with lupus, but I am also living with epilepsy. I am happy to say that due to the changes I have made mentally and with the key points above I have been in remission with lupus and am able to manage it with counseling, diet and exercise, mindfulness, the strong support of my husband, and most importantly treating myself as I should. And through all my struggles, one of the hardest things is the fact
I truly believe that all of the battles I have fought through and made it out the other side of, beaten and worn, were for a purpose. My life was spared so that I could use my story to impact the lives of others. In my profession, I notice a huge difference in the way I view and treat my patients. I make a conscious effort to not prejudge someone for how they look because I know what it is like to look “normal” but feel like every bone in your body is breaking. My dad told me that what I do is truly a ministry. And now I can actually feel it. I can connect with people on a different level, and this allows me to develop a higher level of trust with my patients. In my heart I feel that everything happens for a reason. I have these ailments, but I also have the ability to utilize them for good. I became more involved with the Lupus Foundation of America, Greater Ohio Chapter, and the opportunity to educate and impact lives
has grown tenfold! Sharing my story, my hiccups, my defeats and comebacks—there is no greater feeling than knowing that I can have an impact on someone else’s life. And that is really how I push forward now. I am happy to report my lupus has been under control for almost 4 years. And the main factor that has impacted this is changing my mindset. The power of the mind is immense. Learning how to tap into that power can change your life, I know because
“In my heart I feel that everything happens for a reason. I have these ailments, but I also have the ability to utilize them for good.”
it has changed mine. I am now proud to say that I am a survivor and I will never stop finding a way to win. And the survivor in me has been able to come full circle and fulfill the destiny I felt as a young child - to be of service to others and impact the quality of life of those around me.
Systemic lupus erythematosus (SLE) is an autoimmune disease that disproportionately affects minority populations. Estimates of SLE mortality by race and ethnicity are lacking, particularly for Asian and Hispanic/ Latino persons. A recent study reports that the mortality among Asian persons with SLE is four times higher, and among Hispanic/Latina females with SLE mortality is six times higher than that of their counterparts in the general population. This is why it is vital to ensure the coordination of robust care models between primary care providers and rheumatologists to ensure people with SLE receive a timely diagnosis and appropriate treatments that might help address SLE-associated mortality. As a community, we must help one another and talk more about lupus and help others understand the importance of lupus awareness and education. By simply talking and sharing your lupus story you could potentially help others to be better self-advocate to take a charge of their life and live well with a chronic illness.
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16 OCTOBER
2021
“I walk for my two girls. Because if I somehow genetically passed this along to them, I want there to be a cure that allows them to continue to live life exactly how they choose - without limits. ”
Hartley Suter
Walk Warrior
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“We can use the pain and turn it into spiritual growth.” - Author Unknown I have always loved this quote because I believe that it has truly been the foundation of my perseverance, it was how I outlived what my doctors thought would happen. I have tried my best to use all of my mental, physical and spiritual pain as ways to grow closer to God. I am not saying that I do not have bad days, because I do, but I have always tried to use my lupus as a way to grow. I also know that pain is miserable and I would never wish this upon anyone, but this is just my way of dealing with the pain in a way that works best for me. I was diagnosed with lupus in 1995. I was 28 years old and it turned my whole world upside down in so many ways. I was working in Detroit as a home care hospice nurse at the time, and I
LAURA
BIERNACKI’S WALK STORY was having problems keeping up due to constantly feeling ill. I was having a lot of weird symptoms such as the famous butterfly rash, sensitivity to the sun, joint pain, fatigue that caused me to fall asleep at the wheel, and a lot of inflammation in my lungs. I also found myself forgetting a lot and feeling very depressed. I had to stop getting highlights in my hair because it started falling out due to my sensitivity to the chemicals. Finally, I went to my physician in frustration because I would get high fevers of 104 degrees, severe joint pain and such horrible fatigue. I always felt like I had the flu. It took about six months to get diagnosed with lupus. I was blessed with a wonderful physician who was very thorough and knowledgeable. Back in the 1990s, not much was known about autoimmune diseases like lupus. In fact, I remember in nursing school briefly going over autoimmune diseases. There weren’t many treatments or knowledge back then, but Dr. Chari was a very smart and wellread man who did all sorts of blood tests and other types of tests on me. He listened to me, believed me, and supported me. The day Dr. Chari did the tests on me, he called me to tell me my diagnosis was extremely profound. It was also the same exact day that my twenty year old patient died of lupus. Talk about a shock. I was terrified, but Dr. Chari told me that I had a much milder case than her, so I felt some
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relief. But even with that relief, I was still in shock and really scared. I hated this disease because I had to give up my dream career as a hospice nurse. I felt it was my calling and that it was what God wanted me to do. However, the hours were too demanding and I continued to flare. I even started having some heart problems, but that eventually got resolved. As time went on, I had an amazing boyfriend who is now my husband. He supports and loves me unconditionally. He helped me get my master’s degree in counseling so that I could have a career I could handle. I felt like God was telling me that I was supposed to help people through therapy instead of nursing. However, that did not work out. Shortly after graduation, I started having bizarre symptoms which turned out to be neuropsychiatric lupus. These symptoms included full-on hallucinations, migraines, paranoia, losing my balance due to dizziness, numbness in my arms and legs, depression, and anxiety. One time, I was sitting in my car and I felt like the car was falling fast through the ground. I would also lose all sense of time, similar to a blackout. Sometimes, I didn’t even know where I was. I am originally from Detroit, but because I was living in Cleveland, I couldn’t remember if I was in Cleveland or Detroit. It was absolutely terrifying. I eventually
embraced my hallucinations as my friends and used as much humor as possible to deal with my unusual situation. Luckily, I had this amazing rheumatologist, Dr. Stein and my awesome neurologist, Dr. Miller to diagnose me with CNS lupus and find a good treatment. They tried different infusions, but the best infusion was Rituxin. I am still on Rituxan as well as Plaquenil, which seems to be keeping my CNS lupus at bay. My rheumatologist Dr. Stein ended up retiring, but he was replaced by another great rheumatologist, Dr. Ahmad, who continues my Rituxin infusions and other treatments today. In 2018, I started being unable to eat much more than ¼ cup of food without throwing up and being nauseated. I was also extremely constipated, I went from 125 lbs down to 92 lbs in just a few months. I cried constantly because I couldn’t eat. Basically, I was starving to death and I looked like I was dying. I ended up in the emergency room at Southwest General Hospital because I had blood in my stool and I was throwing up blood. It was then that I met a wonderful gastrointestinal physician, Dr. Newton, who saved my life. He did a bunch of tests and found that I possibly had gastroparesis. He put me on tube feeding so that I could finally get my nutrition. He first tried an NJ tube that went down my nose and into my small
“A very important way that I have learned to deal with having lupus is to find the meaning in my suffering. “ bowel. I still couldn’t stop throwing up, so I ended up in the hospital again. I guess on top of everything else, my mesenteric artery in my abdomen collapsed, blocking my intestines. Therefore, I not only could not eat, but the nutrition from the little food I could eat was null and void. The intestines not only digest, but they are designed to absorb the nutrients from the foods that we eat. After a month, I was able to get my feeding tube pulled because I had finally gained weight. I weighed 105 lbs, which was awesome; however, the symptoms came back, and I dropped back down to 92 lbs. Dr. Newton told me that I needed a more permanent solution, which was the PEJ tube being inserted directly into my intestines to feed me. The usual medicine that is used for gastroparesis was not an option for me because I was
“I have learned over the years to try to keep a positive attitude and use a lot of humor. ”
on Plaquenil. Plaquenil and certain medications when taken together can be very harmful for the heart, so I had the PEJ tube put in and wore it for two years. During these two years, both Dr. Newton and his nurse practitioner, Allison felt I should see Dr. Cline at the Cleveland Clinic. He was an expert and was doing a lot of research regarding motility issues such as gastroparesis. They wanted to see if there were more options for me where I could get rid of the feeding tube. I saw Dr. Cline who wanted to run more tests. He did a smart pill test where you swallow this pill that measures the movements of your stomach all the way through your intestines. The purpose behind this is to find any motility issues with either one’s stomach, intestines, or both. It indicates if you are having slow or no motility. He also drew a lot of blood and tested for things I had never heard or seen before. The results showed that it was not my stomach, but my intestines which showed almost no motility. That was why I was so severely constipated and would fill up on food so quickly. My intestines were literally frozen. My blood tests showed it was neurological and autoimmune, which was no surprise because most MAGALIVING WITH LUPUS MAGAZINE ZINE
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people have more than one autoimmune disease. He diagnosed me with a very rare disease known as autoimmune gastrointestinal dysmotility disorder. The disease itself was discovered in 2017, and very few people in the medical community knew about it. The only treatment known to work are IVIG infusions, which are done weekly to every other week. He put me on IVIG infusions, and after six months I started eating. Dr. Newton was finally able to pull my tube! It was a glorious day to be able to eat. I was not able to eat before for two full years, so I was ecstatic. I have to follow a bland diet, but I do not care because I am able to eat real food. Lupus is a pain in so many ways. As many lupus warriors know, it takes away so many things in life such as having a career or being able to have any type of normal life. However, I have always believed that my attitude is extremely important, not only for my survival, but also to have a meaningful life. I wanted to enjoy the life God gave me, even if it was not perfect. Then again, I do not know anyone who has a perfect life, with or without a disease.
So how do I cope and stay positive? I have learned over the years to try to keep a positive attitude and use a lot of humor. Of course I have my bad days like everyone else. I cannot deny my feelings of anger, anxiety and sadness, because if I try to force myself to stay positive and deny my feelings, I end up stuffing down my emotions. This doesn’t feel good because I end up blowing up at the wrong time and at the wrong person. Instead, I look at my feelings and try to deal with them in a more positive manner. For example, I find physical exercise such as boxing, to be very therapeutic. I also talk about my feelings to my family and my friends or my therapist. I am truly 12 9
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blessed to have such a wonderful support system. I also find that various types of complementary therapies such as Reiki, acupuncture, massage, Qigong, meditation and prayer help me deal with a lot of anxiety and pain that goes along with having a chronic illness. Finally, my faith is one of the biggest ways that I find helps me cope with all of the uncertainty of having lupus. I try to put all of my anxiety into God’s hands and trust Him to take care of me. I try to look at lupus as my teacher. Lupus has taught me many things: I have learned to be grateful for each day that I am still here; I have learned to have faith in God, that things always work out even if it’s not in the way I wanted or pictured it to; I have learned patience with myself and others; I have learned to feel compassion for so many other people that are suffering in ways worse than I am; I have been
forced to slow down and try to savor each moment. None of us know the future, and with autoimmune diseases, we could be fine one day and in the hospital the next. A very important way that I have learned to deal with having lupus is to find the meaning in my suffering. Throughout my life, it seems like anything bad that has happened to me has had a purpose, even if I couldn’t see the reason for a long time. As I have mentioned already, I feel like I have become a much better person since my diagnosis. I’ve found that I have the strength to endure more than I have ever realized. I also mentioned that I am lucky enough to be able to be of service to others, just not in the way that I thought I would. One way was becoming a Reiki practitioner.
Another way I tried to help others was I ended up writing a book called Stronger Because Of It. I never thought I could do something like this, but my dear friends Matt Buonocore and Alaina DaRin convinced me to try. They are wonderful poets who love to help others find their inner author. They convinced me that I could help other chronic illness warriors with my story and help them feel not so alone, and also help them find ideas for coping after being diagnosed with a chronic illness. Since I have been dealing with lupus and other diseases for almost thirty years, Alaina and Matt felt that my life experience could be of service to others. So with their help as my mentors, editors, and publishers, I wrote this book that I pray will help other people, especially those who are struggling and are newly diagnosed. I feel strongly that we are called to help people in our life journey, that service to others is a very important part of our purpose in life. I want everyone reading this to understand that you do not need to write a book to help people. I feel that being kind, a good friend
and smiling at others is just as important. It’s the little things in life that brighten people’s day. As St. Theresa of Lisieux said, “A word or a smile is often enough to put fresh life in a despondent soul.” She also said, “Remember that nothing is small in the eyes of God. Do all that you do with love.” That is why I walk for the Lupus Foundation of America, Greater Ohio Chapter. I walk because I have seen incredible improvements in treatments for lupus patients. I have found that the awareness and understanding of autoimmune
diseases have improved so much over the time than when I was a student in nursing school, reading only a paragraph or two on these diseases. I walk for my patient who died in hospice the same day I was diagnosed. I walk to raise even more awareness, understanding, and money for research because we still have a ways to go. The treatments and education are vastly improved compared to the early 1990s. However, we still need to find a cure. We need to keep walking and get the message out there. That is why I walk.
“We need to keep walking and get the message out there. That is why I walk.” MAGALIVING WITH LUPUS MAGAZINE ZINE
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Everyday someone is diagnosed with systemic lupus erythematosus (lupus), a mysterious disease. I was diagnosed in 2010 with the disease. It took me years to accept what had happened in my life after my diagnosis - knowing that there were no answers as to the cause of lupus and worse, no cure. I attended some support groups here and there, but I was broken in more ways than one. I would ask God, “why me?” And it’s the same response, “Why not you?” Now there’s Covid, all these people are dying, some in the healthiest state....finally, I realized that instead of wallowing in my depression, I needed to get up and get active. Support the fight to find a cure and surround myself with those who understand, as well as educate those who do not. I also want to be a light for my son who is Autistc. Someone he can look to in
JASMINE ALLEN-STONE WALK STORY times of discouragement. I want to show him that you can overcome any obstacle with bravery and determination. It took me a long time to accept what was going on with my health. And I mean a long time. I hardly ever went to the doctor as a child
or young adult. I went two years with joint pain, fatigue, and inflammation before a doctor could figure out what was happening. The medical community made me feel as if I was a hypochondriac, just making stuff up. Anyhow, things changed right after I had my first son in 2008. It’s been tough, but I’m still blessed because I read about and see what others (including my mother-inlaw) go through with this and I try to remember it could be worse. Lupus has put me in the hospital a few times. I still don’t know how I got this disease. No one in my immediate family has it to my knowledge. This is why I decided to help raise funds through the Walk to End Lupus Now® to go towards research and hopefully, one day, find a cure.
“I want to show him (my son) that you can overcome any obstacle with bravery and determination.” 14
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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
Text Message Notifications 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.
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
GET INVOLVED
JOIN THE COMMUNITY
Email Sign-Up
Become a Member
Advocacy
One-year: $25 Lifetime: $200 lupusgreaterohio.org/get-involved
The Digital Advocacy Summit took place in March. Thank you to everyone who joined to make an enormous difference in the fight against lupus. Over 3,700 lupus advocates were registered. The event was a huge success!
Host a Third-Party Event Do you have an idea to support the mission? Give us a call at the office to discuss and plan your own fundraising activity to benefit the LFA, GOC. Here are a few examples of virtual events that people have coordinated in the past: Pampered Chef Party, Online Auction, Charity Video Game Tournament. If you are interested in hosting a third-party event, reach out to us for our official guidelines and an application.
We invite you to register to be a lupus advocate in Ohio. Our current initiative is to keep lupus in the state budget for the new biennium. Much of the educational and support programming produced by the LFA, GOC over the past two years has been a direct result of the funding provided by the state of Ohio and the Ohio Department of Health. It is imperative that we let Ohio’s leadership know the importance of keeping lupus in the public health agenda. lupusgreaterohio.org/ get-involved/advocate
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WAYS TO GIVE Traditional
Through Your Job
• 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.
• Employer Matching Gift Program Ask your employer if they match charitable contributions made by their employees.
• Credit Card + PayPal Fill out the online donation form or call the office. • Facebook Fundraisers • Instagram Stories
• Combined Federal Campaign CFC #51890 • Creating Healthier Communities CHC #9963 • United Way Campaigns
In Honor of Investing • Memorial Donation • Tribute Donation
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• Stock or Other Securities • Life Income Plans Pooled Income Fund Charitable Remainder Trusts
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. For more information on ways to give, please visit lupus.org/ohio/ ways-to-donate or contact the office. For more information on ways to give, please visit lupusgreaterohio.org/ get-involved/donate or contact the office.
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“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. 18
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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
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
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.
We don’t think anyone should wait YEARS for a diagnosis. The sooner someone is diagnosed, the sooner
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the
POWER OF
journaling BY: LESLIE VIZCARRA-TIERNEY LEAD PATIENT NAVIGATOR
One of the best things about journaling is that you do not have to be a good writer to receive the benefits. There are several styles of journaling and you can utilize any of them depending on how you feel at the moment. Journaling has power behind it and there are several benefits to practicing this self-help skill. Four of the benefits you can receive are: 1. Provide Clarity By creating a journal it allows you to track patterns, trends, and make self-improvements over time. Purging your thoughts out of your mind onto physical paper through writing, helps to release stress and provide mental room to make better decisions. 2. Reduce Anxiety When you can take time to reflect on your feelings and emotions it will help you sort through the emotional stress you carry. Giving yourself a tool to manage stress will aid in reducing the pressure, ultimately leading you to reduced anxiety levels. Through journal20
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ing, you can identify emotional scars allowing you to reduce your anxiety by healing your negative thoughts. 3. Improve Problem-Solving When you reflect by reading past journal entries, it helps improve your problem-solving skills. Your reflection on different experiences can help you recognize which previous actions were successful and which were not. Perhaps in a past entry, you wrote about how much you enjoyed a brisk walk with a friend. This can prompt you to reach out and set up another walk date. Or perhaps you come across an entry where you were feeling low. Coming back to that entry reminds you of that time and your desire not to return to the emotional turmoil you once felt. 4. Strengthen Coping Skills We all have different experiences in life and how we react to situations determines their outcome. How we choose to cope with a problem can be helpful or harmful and build up to be a bigger issue.
Everything does not always go according to plan. Targeting positive coping skills will guide you to make better decisions. Journaling can help sort out the experience and provide your thoughts with a coping skill to recover from a difficult situation. How do you get started? If you have never tried journaling it can seem like a meaningless task. Or perhaps you have given it a try and have been meaning to give it another go. To start receiving the benefits, you have to give it some effort. Start by simply taking the time to just write. Journaling does not have to take long at all. You can start a routine and write three to five times a week for roughly 15 minutes. You will be surprised how these few moments can help improve your mental health. There are several styles you can utilize in a journal. • Use a good old fashion notebook and pen and start writing. Do not worry about penmanship,
grammar, and punctuation. Just let your thoughts go and write down your feelings. If you are having trouble knowing what to write about, use these topics as prompts: • Write about something or someone important to you. • Write about things you are grateful for and explain why. • Write about the advice you would give your younger self. • Write about a current struggle or challenge and come up with possible solutions. • Write about the top 10 things you want other people to know about you. • Write about things you are proud of and things to look forward to in the future. • Try scribble journaling. Sometimes we have a lot of emotions all at one time. It can be therapeutic to your mental health to just purge out your feelings. Scribbling can feel like an emotional release of pent-up feelings and negative energy that was once stuck. How to get started:
“
• Use your non-dominant hand to write. • Sit in a comfortable place and scribble-write your thoughts out on the paper. The words should not be legible. But you should scribble-write to release and let go of your experience. • Once you feel you have finished scribble-writing take all the pieces of paper and tear them all up. Rip the paper to let go of the emotional baggage. • Set time aside to safely and responsibly burn the paper. You can wait to burn your scribble journal entries at one time. You can collect them and burn them when you have a campfire or when you light your fireplace. But this step is an important part. Make sure you burn them to signify a release of the past emotion that no longer serves a purpose. *Safety Disclaimer: You need to be responsible during this step. Make sure you burn in a properly well-ventilated location that is safe from allowing the fire to spread.
• Bullet journaling is a helpful way to journal and organize your thoughts. This style is like combining parts of a day planner, diary, and written meditation. If you like making lists this style might be a great one to try. It can help to coordinate and streamline your thoughts and life to be more productive, by visualizing and setting intentions of your personal and professional goals. Start by using the sample of the bullet journaling page in this issue. The actual power of journaling is all up to you. If you allow yourself to create and practice self-help tools like journaling, you are unleashing the power within yourself to make improvements. These small adjustments in life can all add up to something much more significant. Taking time to journal is a way for you to discover that you do have the power to make a change. Journaling can help you prioritize your thoughts and release negativity that no longer serves a purpose. This can lead you to find mental clarity by releasing any worries. You are important and worthy of a life that has many wonderful possibilities. Discovering and understanding your desires will help you prioritize and set obtainable goals. Try it for yourself and experience the possibilities. Open yourself up to the benefits that the power of journaling can offer you.
r u o y t e Just l go & write thoughtsour feelings . down y
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Use this sample bullet journaling sheet to start prioritizing your thoughts and goals:
DATE _______________
TODAY’S GOALS
SCHEDULE
LIST 3 THINGS YOU ARE GRATEFUL FOR
DAILY REFLECTION HOW MOTIVATED ARE YOU?
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ENJOYING THE SUMMER WITH LUPUS ERYTHEMATOSUS Anthony P. Fernandez, MD, PhD
The onset of summer often triggers mixed emotions in patients with lupus erythematosus (LE). On the one hand, there is a desire to enjoy beautiful weather and participate in outdoor activities with family and friends. On the other hand, concern that sun exposure will trigger disease flares and/or new LE manifestations can cause significant anxiety. An understanding of how sunlight (ultraviolet radiation, or UVR) can precipitate or aggravate LE, in addition to strategies to mitigate risk of excess UVR exposure, can optimize the enjoyment of summer months for LE patients. Photosensitivity represents a hallmark symptom of LE and often manifests as cutaneous lupus erythematosus (CLE), which may occur as the sole manifestation of LE or as one manifestation of systemic LE (SLE). In fact, the skin represents the second most common
organ involved in SLE1. Photosensitivity can also lead to symptoms of fatigue, joint pain, or even onset of lupus nephritis in SLE patients exposed to excess UVR2,3. Importantly, there has been significant progress in understanding how excess sun exposure contributes to the onset/aggravation of LE. It is thought that the accumulation of apoptotic (dying) cells is fundamental to the pathogenesis of both SLE and CLE4. Research suggests that, in a background of LE immune system dysfunction, sun/UVR exposure leads to pathologic accumulation of apoptotic cells in the skin5. Under normal conditions, immune system cells efficiently clear apoptotic cells. However, LE patients demonstrate impaired or delayed clearance of apoptotic cells in the skin, leading to the accumulation of UVR-induced cellular debris. This debris includes intracellular,
DNA-containing nuclear material that promotes the formation of LE autoantibodies and activates cells to secrete interferon (IFN)-α, a key molecule involved in LE inflammation6. Excess sun/UVR exposure also triggers production of other pro-inflammatory molecules known to be involved in LE inflammation and onset of various LE symptoms and physical manifestations7. With this in mind, it is important for patients with LE to balance enjoyment of the outdoors during summer months with adequate sun/UVR protection. Several important points are critical to understand in order to accomplish this balance. First, it is important to recognize that the threshold sun/UVR dose needed to trigger LE flares is lower than that of a sunburn8. So recognizing the amount of sun exposure one can personally tolerate without LIVING WITH LUPUS MAGAZINE
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getting sunburned is important. Furthermore, it is suggested that subsequent exposures to UVR following an initial UVR-induced LE flare result in a significantly higher frequency of UVR-induced eruptions6,9. Thus, meticulous sun/UVR protection is especially important for LE patients who have already had an initial UVR-induced flare. So what can LE patients do to adequately protect themselves from excess sun/UVR exposure aside from simply avoiding it by staying indoors? An obvious strategy is to apply sunscreen regularly. Studies have suggested that sunscreens can effectively protect most LE patients against harmful amounts of UVR, including those patients who have previously developed UVR-induced skin lesions10. Clinical evidence also suggests that consistent sunscreen protection in patients with SLE is associated with significantly better systemic outcomes, such as less frequent renal involvement and decreased need for immunosuppressive treatment9,11. LE patients should also do their best to avoid and/or protect themselves from mid-day sun exposure (approximately 10AM to 3PM), when UVR is strongest and has the most potential for causing harm to the skin. Finally, LE patients should also recognize that sun/UVR exposure through windows at home or during long car rides might lead to precipitation of LE inflammation. Therefore, CLE and SLE patients should wear sunscreen in the summer even when only exposed to UVR through car/ home windows. Using appropriate types of sunscreen in adequate amounts is key to achieving UVR protection. In a
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vehicle-controlled, randomized, comparative double-blind study, it was demonstrated that use of a broad-spectrum sunscreen with high UVB and UVA protection factor can prevent skin lesions in patients with photosensitive CLE12. The American Academy of Dermatology recommends at least 30 mL of sunscreen with a high sun protection factor (SPF 50) to cover exposed skin to achieve the goal concentration of 2 mg/ cm211. This translates to ~1 ounce of sunscreen, or enough to fill a shot glass, to cover all skin not covered by clothing13. Remembering this is especially important for LE patients, as studies suggest in the real-world patients often apply only 25–50% of this recommended sunscreen amount13,14. Moreover, LE patients should remember to apply sunscreen daily, as research supports sunscreen usage typically decreases significantly on overcast days despite the UV index being >6 (dangerous levels)15. Sunscreen should be applied at least 20 to 30 minutes before sun exposure, and repeat applications should occur every 2 hours when outdoors. Currently, there are no studies that have specifically evaluated the effectiveness of sun-protective clothing for preventing UVR-induced, LE skin lesions16. However, results of studies in the general population suggest wearing such clothing is likely effective and should be encouraged. An unintentional effect of intense sun protection can be development of vitamin D deficiency. Usually, sun exposure to the skin provides sufficient vitamin D in healthy individuals. However, in a recent study of CLE patients, 25-hydroxyvitamin D levels were
significantly lower among sun avoiders and daily sunscreen users17. Therefore, dietary supplementation with at least 400 IU per day of vitamin D3 (cholecalciferol) is recommended in all LE patients who actively avoid sun exposure and frequently use sunscreens. When daily sunscreen and/or sun-protective clothing is ineffective, antimalarial medications may be helpful for LE patients. Antimalarials protect against UV light absorption and inhibit development of CLE lesions18. Currently, antimalarials are considered first-line systemic treatment for CLE. There are 3 antimalarials that have traditionally been used to treat CLE: hydroxychloroquine (HCQ), chloroquine (CQ), and quinacrine. Several studies have recently explored optimal use of antimalarials for CLE. In one study, researchers examined the effectiveness of switching antimalarials after patients either (1) failed to respond or (2) had an adverse reaction to a first antimalarial19. This study found >50% of patients responded to a second antimalarial after failing the first, although response to the second agent seemed to decrease with time. Additionally, 69% of patients exposed to a second antimalarial agent after having an adverse reaction to the first agent tolerated it without incident, and 80% of patients who tolerated the second antimalarial agent responded positively to it. Additional studies suggest adding quinacrine to either HCQ or CQ can also be a useful and safe strategy for up to two-thirds of patients who fail either medication as monotherapy20,21. Consideration of the above strategies when needed can potentially prevent LE patients
from exposure to more toxic immunosuppressive medications to control active disease. One caveat to the use of antimalarials is that quinacrine is not currently manufactured by any company. Quinacrine has the advantage of not being associated with retinal toxicity, unlike HCQ and CQ. Studies have also suggested quinacrine may be a stronger anti-inflammatory agent than HCQ or CQ23,24. Although quinacrine was previously obtainable from India and compounded into capsules readily by most compounding pharmacies, this ceased in 2019 when the US Food and Drug Administration (FDA) placed an import alert on an international manufacturer22. Thus, finding ways to bring quinacrine back to a clinical setting or finding alternative medications for LE patients is important. In summary, excess sun/UVR exposure can be detrimental to LE patients. However, understanding and implementing various sun protection strategies, including sun avoidance, sunscreen application, sun protective clothing, and antimalarial medications can protect LE patients from UVR’s harmful effects. In turn, these strategies can ease anxiety and help LE patients enjoy the unique events and aspects of summer that make it an exciting time of year. References 1. Obermoser G, Sontheimer RD, Zelger B. Overview of common, rare and atypical manifestations of cutaneous lupus erythematosus and histopathological correlates. Lupus 2010;19(9):1050–70. 2. Kim A, Chong BF. Photosensitivity in cutaneous lupus erythematosus. Photodermatol Photoimmunol Photomed 2013; 29: 4–11. 3. Schmidt E, Tony HP, Brocker EB, Kneitz C. Sun-induced lifethreatening lupus nephritis. Ann N Y Acad Sci 2007;1108: 35-40. 4. Kuhn A, Wenzel J, Bijl M. Lupus erythematosus revisited. Semin
Immunopathol 2016;38:97–112. 5. Scholtissek B, Zahn S, Maier J, et al. Immunostimulatory endogenous nucleic acids drive the lesional inflammation in cutaneous lupus erythematosus. J Invest Dermatol 2017;137:1484–92. 6. Kuhn A, Wenzel J, Weyd H. Photosensitivity, apoptosis, and cytokines in the pathogenesis of lupus erythematosus: a critical review. Clin Rev Allergy Immunol 2014; 47: 148–162. 7. Robinson ES, Werth VP. The role of cytokines in the pathogenesis of cutaneous lupus erythematosus. Cytokine 2015; 73: 326–334. 8. Obermoser G, Zelger B. Triple need for photoprotection in lupus erythematosus. Lupus 2008; 17: 525–527. 9. Ruland V, Haust M, Stilling RM, Amler S, Ruzicka T, Kuhn A. Updated analysis of standardised photoprovocation in patients with cutaneous lupus erythematosus. Arthritis Care Res 2013; 65: 767–776. 10. Herzinger T, Plewig G, Rocken M. Use of sunscreens to protect against ultraviolet-induced lupus erythematosus. Arthritis Rheum 2004; 50: 3045–3046. 11. Kuhn A, Ruland V, Bonsmann G. Cutaneous lupus erythematosus: update of therapeutic options part I. J Am Acad Dermatol 2011; 65: e179–193. 12. Kuhn A, Gensch K, Haust M, Meuth AM, Boyer F, Dupuy P, Lehmann P, Metze D, Ruzicka T. Photoprotective effects of a broad-spectrum sunscreen in ultraviolet-induced cutaneous lupus erythematosus: a randomized, vehicle-controlled, double-blind study. J Am Acad Dermatol. 2011 Jan;64(1):37-48. 13. Sunscreen FAQs (aad.org). Accessed August 7, 2021. 14. Mancuso JB, Maruthi R, Wang SQ, Lim HW. Sunscreens: an update. Am J Clin Dermatol 2017; 18: 643–650. 15. Wood M, Raisanen T, Polcari I. Observational study of free public sunscreen dispenser use at a major US outdoor event. J Am Acad Dermatol 2017; 77: 164–166. 16. Vilá LM, Mayor AM, Valentín AH, Rodríguez SI, Reyes ML, Acosta E, Vilá S. Association of sunlight exposure and photoprotection
measures with clinical outcome in systemic lupus erythematosus. P R Health Sci J. 1999 Jun;18(2):89-94. 17. Cusack C, Danby C, Fallon JC, Ho WL, Murray B, Brady J, O’Kelly P, Ambrose N, Kearns G, Murphy GM. Photoprotective behaviour and sunscreen use: impact on vitamin D levels in cutaneous lupus erythematosus. Photodermatol Photoimmunol Photomed. 2008 Oct;24(5):260-7. 18. Tang C, Godfrey T, Stawell R, Nikpour M. Hydroxychloroquine in lupus: emerging evidence supporting multiple beneficial effects. Intern Med J 2012; 42: 968–978. 19. Chasset F, Arnaud L, Jachiet M, Monfort JB, Bouaziz JD, Cordoliani F, Bagot M, Barbaud A, Francès C. Changing antimalarial agents after inefficacy or intolerance in patients with cutaneous lupus erythematosus: A multicenter observational study. J Am Acad Dermatol. 2018 Jan;78(1):107-114.e1. 20. Chang AY, Piette EW, Foering KP, Tenhave TR, Okawa J, Werth VP. Response to antimalarial agents in cutaneous lupus erythematosus: a prospective analysis. Arch Dermatol. 2011 Nov;147(11):1261-7. 21. Chasset F, Bouaziz JD, Costedoat-Chalumeau N, Francès C, Arnaud L. Efficacy and comparison of antimalarials in cutaneous lupus erythematosus subtypes: a systematic review and meta-analysis. Br J Dermatol. 2017 Jul;177(1):188-196. 22. Yan D, Borucki R, Sontheimer RD, Werth VP. Candidate drug replacements for quinacrine in cutaneous lupus erythematosus. Lupus Sci Med. 2020 Oct;7(1):e000430. 23. Wallace DJ. The use of quinacrine (Atabrine) in rheumatic diseases: a reexamination. Semin Arthritis Rheum. 1989 May;18(4):282-96. 24. Alves P, Bashir MM, Wysocka M, Zeidi M, Feng R, Werth VP. Quinacrine Suppresses Tumor Necrosis Factor-α and IFN-α in Dermatomyositis and Cutaneous Lupus Erythematosus. J Investig Dermatol Symp Proc. 2017 Oct;18(2):S57-S63.
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RESEARCH NEWS SaphneloTM (anifrolumab-fina) has just been approved by the U.S Food and Drug Administration (FDA) as a treatment for adults with systemic lupus erythematosus (SLE). This treatment is for adults who are receiving standard therapy. It is the third U.S. FDA-approved drug, since 2011, used to treat lupus. “After having only one therapy approved for lupus during the past 60 years, it is a cause for celebration to have two new treatment 26
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options approved in 2021 alone for this life-threatening autoimmune disease that affects an estimated 1.5 million Americans,” said Stevan W. Gibson, president and CEO, Lupus Foundation of America. Dr. George Tsokos said that Saphnelo is the first lupus therapy designed to inhibit type I interferons. “We have known since the 1970’s that interferons were involved with lupus. With the approval of Saphnelo, we now have one more drug that allows us to translate valuable
research knowledge into clinical practice with multiple benefits for our patients with lupus.” Dr. George Tsokos is a member of the Lupus Foundation of America Medical-Scientific Advisory Council, Professor of Medicine at Harvard Medical School, and much more. Saphnelo inhibits a key protein in the immune system called the IFNAR receptor that acts as a transmitter. It amplifies signals from tiny messengers called type I interfer-
ons. This process activates many parts of the immune system and can trigger major inflammation. Saphnelo dampens the excessive type I interferon signature found in up to 80% of adults with lupus and as many as 90% of children with the disease. “The approval of Saphnelo is the culmination of years of clinical development,” said Susan M. Manzi, MD, MPH, Lupus Foundation of America Board Chair and Medical Director and Chair. “Arriving at this important treatment milestone required the involvement of hundreds of people with lupus from around the world, who volunteered to participate in multiple clinical trials. We are grateful for their unselfish efforts, as well as those of basic and clinical physician-scientists who work tirelessly to support lupus drug development. Without them, we could not bring new life-changing therapies to those who need them.” AstraZeneca developed Saphnelo. It is a monoclonal antibody administered by intravenous (IV) infusion. The FDA approved Saphnelo for use in treating adults with moderate to severe SLE who are receiving standard therapy.
Original article: https://www.lupusgreaterohio.org/lupus-foundation-of-america-celebrates-fda-approval-of-saphnelo-anifrolumab-fnia-as-a-new-treatment-for-lupus/?fbclid=IwAR2f39AOHCFe7qTsiKSMlDM6Bb52HNGAZadJreKcju6Dm4W73X89Ankhp9o “Lupus Foundation of America Celebrates FDA Approval of SAPHNELOTM (Anifrolumab-Fnia) as a New Treatment for Lupus.” Lupus Foundation, Ohio, 2 Aug. 2021, www.lupusgreaterohio.org/lupus-foundation-of-america-celebrates-fda-approval-of-saphnelo-anifrolumab-fnia-as-a-new-treatment-for-lupus/?fbclid=IwAR2f39AOHCFe7qTsiKSMlDM6Bb52HNGAZadJreKcju6Dm4W73X89Ankhp9o.
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PRODUCING A PODCAST BY: STEPHANIE HOLMES | LFA, GOC STAFF About a year ago, Suzanne came to me with the idea of starting a podcast. I have a background in audio engineering so I was excited about this project. There was an empty office that we could use and I already had recording software. All we needed were microphones and charisma and we could get started. While we did have an extra office to record in, it wasn’t easy turning it into a manageable studio while also distancing the mics so guests would be comfortable recording in person. It took a few tries but I finally found a set up that worked. We were ready to record!
There was definitely a learning curve with the first couple recordings, but once we got into the flow of it, it went a lot easier. Setting up before we record usually takes me about 15 minutes. I check for anything I might need to troubleshoot before we begin, I make sure the mics are connected, and our seats are properly socially distant. The tear down process takes around the same amount of time. I make sure all of our data is where it needs to be and then I settle in for the editing process. This is always the most time-consuming but also the most rewarding. The passion and professionalism that comes from our guest speakers tends to make my job easy. I am happy to provide 28
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the platform to present all the ideas we hope to share. Once we got the hang of in person recordings, we needed to come up with an even safer option for guests who wanted to remain socially distant. Therefore we started to do virtual sessions. For a virtual session I simply email the guest a link that will take them to a virtual room with Suzanne, from there I just press record and let them talk. While this may sound easier it presents a different set of challenges. I don’t have to set up any mics or even use my recording software, but don’t have much control over the audio quality. Sometimes the internet connection is weak, or it goes out all together. There might be a delay or extra static. However, these are challenges we have faced head on and found new ways to overcome. So far we have recorded eight episodes and have covered a range of topics. We have talked about depression, patient stories, support groups, hair loss, and much more! People have really enjoyed being a part of My Lupus Living Room and I really enjoy producing it! In the intro to every episode, Suzanne says, “I believe this project will not only create
awareness about lupus, but offer encouragement to those listening.” I couldn’t agree more! This podcast is another way for us to engage with the community, an opportunity for people to learn about lupus, and good recourse for patients!
Around the same time that we started the podcast, we also started the blog. Lupus Night Light is sort of an extension of the podcast. While Suzanne writes most of the blogs, some of the staff here at LFA, GOC, including myself, have written for the blog as well to share their experiences with lupus. For Suzanne however, she writes about her own personal experience with lupus and how it affects her day-to-day life. She also talks about her experience with lupus amidst living in a global pandemic. Lupus isn’t just a physical illness. There is a lot of pain, anxiety, and depression that comes with it. We can’t make those feelings disappear but between the blog and the podcast, we certainly try to connect to people on a more personal level. If you want to be a guest on My Lupus Living Room or if you want to write a post for our blog, please send me an email at stephanie@ lupusgreaterohio.org. Everyone has a unique story to tell and we would love to hear yours!
Lupus Awareness Month & POP Day Recap May was Lupus Awareness Month and as you can imagine that is a busy time for us. The Lupus Foundation is committed to many things like advocacy, awareness, research, and education just to name a few. But during the month of May we are particularly eager to share exactly what lupus is and why we fight so hard to raise awareness of it. Lupus, to say the least, is confusing. It’s symptoms can look like other illnesses and therefore is often misdiagnosed. On average it takes 6 years for a patient with lupus to be correctly diagnosed. To raise awareness of that, we hosted a POP Day live broadcast on May 21, 2021 funded by the Ohio Commission on Minority Health! POP stands for Put on Purple and this program reached over 307 constituents. POP Day was more than just spreading awareness, we also held a fundraiser. We asked for $6 or more to represent the six years of wait time many lupus patients have to endure before being diagnosed. Anyone that donated received a purple Lupus Foundation balloon and a safety pin. We asked them to send us pictures and videos of themselves popping their balloons (and not littering the remainders!) while wearing their most purple outfits. We raised almost $300!
tered nurse from GSK/Us In Lupus. We had 129 registered participants throughout the state of Ohio. During the summit our professionals discussed new treatment options for lupus and the kidneys, updates on lupus and COVID-19, medication management, and we heard an account from a lupian on her experiences living with lupus. We hosted a Web Talk for Young Lupians (WTYL) designed for adolescents (ages 8-18) who are affected by lupus and their guardians/loved ones. We also worked with the Cleveland Job Corps as they hosted an in-office educational program to help the staff better understand lupus. This was all to support a co-worker that was recently diagnosed. And on POP Day the Cleveland Job Corps donated over $300 to the LFA, GOC. In our efforts to raise awareness and transparency during the month of May we shared a daily fact about different aspects of lupus. 31 in total for every day of the month!
coming from only one fundraiser, held by Lisa Flemming. We also held Dine to Donate events at 20 restaurants around Ohio where portions of the proceeds went to the LFA, GOC for lupus research. Rochelle Roy, a constituent from Toledo even held her own Lupus Walk in her city. And she raised over $1,600. All in all we raised over $11,000 for lupus! Lupus Awareness Month was a whirlwind of facts, photos, and fun. We want to say thank you to everyone that fundraised, popped a balloon, or raised awareness in any way this month and every month. We will continue to stand together to fight the cruel mystery of lupus.
And we didn’t stop there! On May 14, 2021 we lit up Terminal Tower in downtown Cleveland purple for lupus awareness! Our favorite color!
May was also a huge educational month for us. We hosted the Spring Virtual Lupus Summit: The Path to Empowerment with physicians from UH hospital and a regis-
Our constituents have been putting in just as much work into raising lupus awareness this May. Some of our constituents set up Facebook fundraisers to benefit the LFA, GOC in total raising over $9,000.00! Over $7,000.00 of that LIVING WITH LUPUS MAGAZINE
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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
Kathy Holmes
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.
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.
Adrienne Rice-Fernandez
Aletha Acree
Lead Project Coordinator Adrienne@lupusgreaterohio.org
Community Outreach Coordinator Aletha@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.
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!
Stephanie Holmes
Lindsay Rinehart
Kay
Administrative Assistant Stephanie@lupusgreaterohio.org
Marketing Coordinator Lindsay@lupusgreaterohio.org
Fundraising & Events Coordinator Kay@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.
I am a master of marketing and all things design. My passion for communication, design, and advocacy led me to a rewarding career in non-profit marketing through organizations like the American Lung Association and LFO, GOC. I love helping to empower patients by listening to their stories and helping to spread the word so others might be encouraged through their lupus journeys. When I’m not designing content calendars or strategizing marketing plans, I’m an avid reader, traveler, and dedicated dog parent.
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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LIVING WITH LUPUS MAGAZINE
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
