Living With Lupus
Sparking Joy by Allison Fedon | Pg. 5 - 6 Stress Management by Dr. Yael Ross | Pg. 21 - 22
Suzanne As we near the end of 2021, I reflect back upon all those who have contributed to our success this year. During the past year, the lupus movement made great strides. We are so grateful to all those who stepped up and stepped in to help. • Our advocacy initiatives afforded us a line item in the state budget for the next two years. • Three medications were approved by the FDA for lupus and lupus nephritis. • We launched our new and improved website. • Hydroxychloroquine is available for FREE to those who need it in the state of Ohio. • We trained 20 patient navigators to provide support and services to all those impacted by lupus in Ohio. • We became a BBB Accredited Charity by meeting strict criteria and standards. • We held numerous virtual educational events throughout the year with nearly 500 attendees. • There were 15 support groups that continued to meet via Zoom or phone. Frankly, it was an exhausting and scary year for us here at the Lupus Foundation of America, Greater Ohio Chapter. Thankfully we all came together to stay true to our mission no matter what was going on around us. We made many adjustments along the way. We learned new ways to communicate and serve our constituents. We appreciate all of you who have stuck by us during these difficult and challenging times! Our donor dollars were a fraction of what we usually receive, yet those who could give, did so generously. Thankfully, our staff worked tirelessly and was able to secure funding from grantors for program support. I would be remiss not to do a shout out to: GSK, Aurinia, CDC, Ohio Commission on Minority Health, The Sam J. Frankino Foundation, and the Ohio Department of Health. We are so grateful they have helped sustain our important work during the pandemic.
With the year-end comes a host of holidays, some of them may look a little different this year due to the limits of the pandemic. Parties and gatherings might be smaller. Traveling may be a challenge, shopping might be discouraging. Our wish is that you hold onto the joy, memories, and traditions of yesteryear and lean on them for they are true treasures. May they remind us of the love of our friends and family where we found peace and love. Stay confident that we will all be able to find our normal soon. We hope that this edition of our magazine will help offer you much joy and happiness for the holidays. We are in this together and we would not have it any other way. You are in all of our hearts and all we do, we do for you. We hope that, whatever you do for the holidays, they are filled with an abundance of love. Looking to the future, I wish you all a healthy, happy, and safe holiday season. Look out 2022, here we all come! With a grateful heart, Suzanne
Suzanne Tierney President & CEO Lupus Foundation of America, Greater Ohio Chapter
CONTENTS
Pg. 1 - 2 Letter from Suzanne
8
Pg. 4 ExactCare Pg. 5-6 Sparking Joy by Allison Fedon
GIVING TUESDAY
Pg. 7 Walk to End Lupus Now® Recap Pg. 8 Giving Tuesday Pg. 9-12 Recipes From Staff Pg. 13-14 Get Involved and Ways to Give Pg. 15-16 CDC Be Fierce Pg. 17-19 Practicing Mindfulness To Find Joy by Leslie Vizcarra-Tierney Pg. 20 Holiday Coloring Page Pg. 21-22 Stress Management by Yael Ross, MD Pg. 23 Research News Update Pg. 24 What is a Patient Navigator? Pg. 25 Podcast and Blog Pg. 26 Staff Page
21-22
912
RECIPES FROM STAFF
17 -19
PRACTICE MINDFULNESS STRESS MANAGEMENT
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.
4
LIVING WITH LUPUS MAGAZINE
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.
S PA R K I N G J O Y I don’t mean I own it or anything, but I decided a long time ago that it was who I wanted to be. Before my lupus diagnosis, before I married or had children, before I settled in my current city - I decided to make joy my choice each day. I remember hearing the phrase “choose joy” in a Beth Moore Bible study 10+ years ago and writing it on a post it note in my office the next day. Is it easy? No. Does it come naturally every day? Of course not! It has however become a habit. When negativity creeps in, when pain overwhelms my senses, when brain fog distracts me from my schedule... I turn to joy. I surround myself with things that make me joyful. Colors I love, photographs of people and adventures, music playlists for every mood, nice candles, favorite hobbies, singing every chance I get, stationary for writing a note, healthy snacks, videos of a favorite comedian, and soft clothes. One small thing I do is carry a beauti-
By Allison Fedon
ful coffee mug with me - home, church, meetings, everywhere. It makes me happy and gives me the opportunity to share with others how they can bring more joy into their lives when they ask why I’m carrying a real mug. It’s a win win! My husband and I have two young daughters and sometimes we all need a shift in the tone of our day, and nothing changes that faster than a dance party! We turn on a favorite playlist and boogie until our grumps fade away. Costumes often make an appearance, too. Pure joy! I also keep opportunities readily available for helping others. Writing encouraging notes and texts, funny memes, a craft that would help or brighten someone’s day, doubling a recipe to share with someone who could use it, or a phone call to check in on a friend. When I’m feeling down, a great way to turn it around is to help someone else find joy. Ask someone else what brings them joy. It
might surprise you! Not only will you learn more about them, but I bet you’ll get some great ideas of how to support them in the future and take care of yourself. Serving in your community through non-profit agencies or simply in your neighborhood is a wonderful way to find joy outside of yourself. Making a plan for activities that bring joy is also helpful when I might just need to get away from my day’s stress. Low/no cost adventures are the best! Visiting the library, taking a walk, sitting on a bench in nature, or people watching, taking a scenic drive, getting a coffee, trying a new recipe, joining a Bible study, or listening to audiobooks and podcasts. As a family we enjoy theme nights. We work with a theme around a favorite movie or topic, and plan away. We’ve had Family Prom, Frozen Night, Grinch Feast, Indoor Campout and so many more. Doing puzzles, legos, and playing board games are other great ways to have low-key LIVING WITH LUPUS MAGAZINE
5
fun with all ages, and can even be done over video chat with others. Finding things that can be done when I’m feeling good enough to get out and about are equally as important as finding things that bring me joy when I need to lay low on the couch that day. Adventuring with my family is wonderful-- but that doesn’t always mean a 10 mile hike! Enjoying a new park or restaurant, meeting new people, admiring murals while walking downtown in a new place are all great ways to bring joy to your life. Having someone to help keep you accountable for choosing joy is also helpful. In college my best friend and I would share our joys for the day. It was wonderful to reflect on our day together, and it truly doubled our joy. A spouse, parent, child or friend are all great options for prioritizing joyful thinking. Keeping a joy journal doesn’t have to be complicated. A notebook that you date and enter a few lines about your daily joys is a great way to look back and remember the good things on days when you’re struggling. My husband, John and I often end the
“
SPARKING JOY IN YOUR LIFE IS NOT A LUXURY, IT’S A NECESSITY.
”
day with “what was your happy today?” This not only gives us great accountability, but it helps us celebrate our life and refocus our energy on the positives even when the day was a struggle. Another great idea is to keep a bucket list of joy. Maybe it’s full of new things you want to try or it’s a comfort list of things that you already know spark joy. Having lupus gives you so little to control each day, but how I approach my day is TOTALLY in my 6
LIVING WITH LUPUS MAGAZINE
control. There is always something joyful to be found even if you have to really search for it. Do you want to know a secret? Often when I’m on a mission to find something joyful I forget that I didn’t have joy when I started because I am just flooded with happiness! I’m turning 40 this month and BOY does that make me joyful! No, I’m totally serious! I’m so thankful and blessed to have the opportunity to celebrate 40 years of life. Does the world tell me to celebrate that? Maybe not, but I’m choosing to and you better believe it will be full of joy!
Let’s summarize:
1. Surround yourself with things that spark joy
2. Keep opportunities at the ready to help others find joy 3. Have a plan for finding joy for yourself 4. Find a joy accountability meth od (a person, journal, bucket list, etc.) 5. You control how you approach your day-- so CHOOSE JOY! Self-care is JOY! Making sure you’re taken care of inside and out is so important when you’re fighting a chronic illness or caring for someone who is. In other words, sparking joy in your life is not a luxury, it’s a necessity. Spend some time today making a list of some of these ideas above that might work for you, and don’t forget to enJOY!
Walk to End Lupus Now® Recap October 16th was the second virtual Walk to End Lupus Now® event. Even though the hardship of the pandemic forced us to stay apart, we still had 54 teams with 191 individual fundraisers and 396 donors supporting our 2021 walk event. The goal this year was $100,000.00 and by mid-October we raised $57,663.69! We had 16 teams that were able to raise over $1,000 each and helped to raise our goal. We are very appreciative of our presenting sponsor GSK/Us in Lupus and to Assurant for being the leadership sponsor. These two organizations helped boost the numbers towards our goal and continue to show their support with helping to find a cure for lupus. We could not have succeeded without their support. Thanks to technology, we were able to have a video of our opening ceremony available on Facebook so participants and supporters could hear from us and other lupus warriors. Melissa Wright, Ma-
rybelle Moyet, Ariel Shelton, and Tammy Shelton shared their stories and Dr. Stan Ballou, Chair of our Medical/Scientific Advisory Board and rheumatologist at MetroHealth Medical System shared a special message. Our CEO, Suzanne Tierney had some wonderful words for people watching the event and GSK/Us in Lupus Cindy
Fiske joined in for the traditional ribbon cutting ceremony. It was a wonderful time to spread the message about lupus and to thank everyone who supported the walk. Even though we had to be apart while we walked, the LFA, GOC received plenty of photographs from constituents and supporters walking wherever they could to spread the word about lupus. We want to give a big shout out to everyone who walked, fundraised, and celebrated our continued search for a cure for lupus. Our gratitude is immense. Thank you! See you (hopefully, in person) next year!
LIVING WITH LUPUS MAGAZINE
7
8
LIVING WITH LUPUS MAGAZINE
Recipes FROM THE STAFF
VegNews Best Ever Vegan Macaroni And Cheese Recipe by: Allison Rivers Samson Provided By: Adrienne
Published: September 1, 2021
What you need:
What you do:
• • • •
1. In a large pot, bring the water and salt to a boil. Add macaroni and cook until al dente. In a colander, drain pasta and rinse with cold water. Set aside.
• • • • • • • • • • • • • •
4 quarts water 1 tablespoon sea salt 8 ounces macaroni 4 slices of bread, torn into large pieces 2 tablespoons + 1/3 cup vegan butter 2 tablespoons shallots, peeled and chopped 1 cup red or yellow potatoes, peeled and chopped ¼ cup carrots, peeled and chopped 1/3 cup onion, peeled and chopped 1 cup water ¼ cup raw cashews 2 teaspoons sea salt ¼ teaspoon garlic, minced ¼ teaspoon Dijon mustard 1 tablespoon lemon juice, freshly squeezed ¼ teaspoon black pepper 1/8 teaspoon cayenne ¼ teaspoon paprika
2. In a food processor, make breadcrumbs by pulverizing the bread and 2 tablespoons vegan butter to a medium-fine texture. Set aside.
3. Preheat oven to 350 degrees. In a saucepan, add shallots, potatoes, carrots, onion, and water, and bring to a boil. Cover the pan and simmer for 15 minutes, or until vegetables are very soft. 4. In a blender, process the cashews, salt, garlic, 1/3 cup vegan butter, mustard, lemon juice, black pepper, and cayenne. Add softened vegetables and cooking water to blender and process until perfectly smooth. 5. In a large bowl, toss the cooked pasta and blended cheese sauce until completely coated. Spread mixture into a 9x12 casserole dish, sprinkle with prepared breadcrumbs, and dust with paprika. Bake for 30 minutes or until the cheese sauce is bubbling and the top has turned golden brown.
Instructions
Apple Rose Tarts Provided By: Lindsay
Ingredients • 1 puff pastry sheet • 2 medium apple sweet red • juice from 2 limes • cinnamon • brown sugar • flour • powdered sugar for dusting
Photo credit: Hannah Kaminsky
1. Thaw puff pastry 2. Preheat oven to 390 F and cut out rectangles from the baking paper. 3. Cut apples in half, core and cut into thin slices. 4. Place slices in a microwave bowl and sprinkle lime juice. Mix well. 5. Place in microwave and heat on high for about 2 1/2 minutes or until apple slices are soft enough to be rolled (experiment first as microwave ovens have different settings). 6. Strain apples through a fine sieve and discard juice 7. On a floured surface, roll out the pastry sheet until half thin. 8. Using a pastry or pizza wheel,
divide in strips, about 4” wide. 9. Place one strip on the counter and line apple slices along one side of the strip, overlapping one another. The top (skin side) of the slices should stick out a little. 10. Using a teaspoon, sprinkle cinnamon and brown sugar. 11. Fold up the bottom part of the strip. 12. Starting from one end, carefully roll the dough, keeping the apple slices in place. 13. Place in the baking paper rectangles then place in a regular muffin cup. 14. Bake for about 25 minutes or until pastry is golden. 15. Dust with powdered sugar optional. Recipe by: https://theseamanmom.com/apple-roses-recipe
MAGALIVING WITH LUPUS MAGAZINE ZINE
9 10
No Bake Key Lime Pie Provided By: Stephanie
Ingredients • Graham cracker crust (store bought or home made) • 14 Ounce can of sweetened condensed milk • 1 teaspoon of finely shredded key lime peel (Add some extra to sprinkle on top if you would like) • ½ cup of key lime juice • 1 cup of whipping cream
Instructions 1. In a medium bowl, combine condensed milk, key lime juice, and key lime peel (don’t mix) 2. In another bowl, whip one cup of whipping cream until soft peaks form 3. Add whip cream to mixture and FOLD the whip cream into the mixture until you get a uniform consistency 4. Once finished, pour mixture into the graham cracker crust 5. Freeze until it is the firmness you want and enjoy!
Optional whip cream • 1 cup of whipping cream • 2 tablespoons of confectioners sugar • 1 teaspoon of vanilla
Browned Butter Chocolate Chip Cookies Provided By: Kay
Instructions
Ingredients • ½ cup (1 stick) butter • ½ cup white sugar • ½ cup light brown sugar • 1 tsp vanilla extract • 1 egg • 180 g all purpose flour • ½ tsp baking soda • ¼ tsp baking powder • ½ tsp sea salt • 1 cup chocolate chunks (recommended semi-sweet)
10
LIVING WITH LUPUS MAGAZINE
1. Allow butter to sit at room temp for 20-30 minutes before beginning. Preheat oven to 375 F. Combine flour, baking soda, baking powder, and salt in a separate small bowl. 2. Brown half the butter. (To brown butter, melt butter in a light-colored pan on medium heat stirring constantly for about 5 minutes or until you can see milk solids separate and start to turn brown, it should smell caramelly and nutty.) 3. Cut the other half of the butter into small pieces and place into a large bowl. Allow for the browned butter to cool off-heat for about 1 minute then mix solid butter with the browned butter until mostly melted together. 4. Combine butter and sugars. Mix until smooth. 5. Add egg and vanilla. Mix until smooth. 6. Mix half of the dry ingredients into the large bowl until mostly combined then add the second half until no dry lumps remain. 7. Add chocolate. 8. Use 3 oz. ice cream scoop to form the dough balls. (Or use your hands if you don’t have one.) 9. Using parchment paper on a baking sheet, bake at 375 F for 10-12 minutes or until edges are golden brown. Yields about 10 cookies.
Cannoli Mom’s Way Provided By: Suzanne
About the Shell:
Save yourself time and agony. Today you can buy the shells already made at the grocery store.
Ingredients • 1 (32-ounce) container whole milk ricotta cheese, drained • 1 cup powdered sugar, plus more for garnish (optional) • 1 ½ teaspoons vanilla • ½ teaspoon salt • Pinch of cinnamon • ½ maraschino cherries, drain and chop into very small pieces. • 1 Hersey with almond bar, grate into mixture.
Busy Person’s Recipe for Holiday Desserts
Instructions 1. To drain the ricotta, line a fine mesh strainer with cheesecloth. Place the strainer over a bowl and add the ricotta to the strainer. Let the ricotta drain in the fridge for about 2 hours. 2. In a mixing bowl fold and stir together drained ricotta, sugar, vanilla, salt, and cinnamon. 3. Add the cherries and chocolate and stir to combine. 4. Transfer the mixture into a piping bag fitted with a large tip. Pipe filling into cannoli shells (no tip use a small spoon and fill from both sides). 5. Extra: melt small amount of chocolate, dip a fork into it and drizzle across the top of the filled cannoli than sprinkle with powdered sugar. 6. Or if you choose, dip each end of each cannolo into chocolate chips, and gently dust the filled and decorated cannoli with powdered sugar. 7. Arrange them on a tray and serve! This is not a prefill and store dessert. To avoid a soft and wet shell, serve soon after filling.
Provided By: Leslie
What you need:
What you do:
• 3 Cups of thoughtfulness • 2 Cups love • 1 Cup of mindfulness • A pinch of knowing your limitations • A local grocery store • Means of transportation can substitute with Instacart • About $10
1. Bring the thoughtfulness up to a boil. Recognizing that it is ok that you can not do it all. 2. Slowly incorporate the 2 cups of love. Then whip in the cup of mindfulness. Think of what your family likes and be mindful to incorporate your family’s favorites. 3. Add a pinch of knowing your limitations by heading to your local grocery store’s frozen food aisle. If necessary place an Instacart or pick-up order. 4. For about $10 you can purchase a delicious Marie Callender’s pie that will for sure be the star at the dessert table. My favorites are the Chocolate Brownie Cream Pie and the Dutche Apple pie. Follow the thawing or baking directions on the box. Then carefully place your store-bought pie in a decorative dish or not. It does come in an aluminium tin. 5. The most important step is to spend time with family and friends this holiday season. Offer to help with dishes and be present during the holiday. Place your cell phone on silent and turn off your notifications for the day.
MAGALIVING WITH LUPUS MAGAZINE ZINE
11
Maple-Pecan Sweet Potatoes Ingredients • 2 ¾ pounds sweet potatoes • ¼ cup half-and-half • 3 tablespoons butter, melted • 3 tablespoons maple syrup • 1 teaspoon kosher salt • ½ teaspoon freshly ground black pepper • ¼ teaspoon vanilla extract • ¼ teaspoon ground cinnamon • 1/8 teaspoon ground allspice • 1 large egg, lightly beaten • Cooking spray • ½ cup mini marshmallows • 2 tablespoons chopped pecans
Simply Amazing Peanut Butter Cookies Provided By: Melissa
Ingredients (Only 4!) • 1 Cup smooth peanut butter • 1 Cup granulated sugar • 1 Large egg • 1 Teaspoon vanilla extract
12
LIVING WITH LUPUS MAGAZINE
Provided By: Kathy *You can make this dish up to two days ahead. Simply bake the potatoes and assemble. Then refrigerate and bake just before serving.
Instructions 1. Preheat oven to 400 F 2. Pierce potatoes several times with a fork; place on a foil-lined baking sheet. Bake at 400 F for 1 hour or until tender. Cool slightly; peel and mash in a large bowl. 3. Reduce oven temperature to 350 F 4. Stir half-and-half and the next 8 ingredients (through egg) into the sweet potatoes. Spoon mixture into a 2-quart baking dish coated with cooking spray. Bake at 350 F for 15 minutes. 5. Remove from the oven and sprinkle the top with mini-marshmallows and chopped pecans; then bake again for an additional 12 minutes or until the mini-marshmallows are slightly melted. Serve immediately. Yields 8 servings (serving size ½ cup).
Instructions 1. Preheat the oven to 325F 2. In a large mixing bowl, mix together the peanut butter, sugar, egg, and vanilla until completely combined. 3. Scoop the dough into a small ball, and place onto a baking tray. (You can line your tray or not). Dip a fork in sugar, and lightly flatten each cookie, making a crisscross pattern. (I make mine big and get between 12-13 cookies). 4. Bake for about 13 minutes (depending on your oven). When they come out, they look like they’re not done. Leave them on the tray for another 2 minutes so that the hot tray crisps the bottom just a little. That way they won’t turn dark. Be careful, lots of peanut butter flavor. They may not last very long.
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
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.
Advocacy 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 reg-
JOIN THE COMMUNITY
GET INVOLVED
Email Sign-Up
istered. The event was a huge success! 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
Twitter.com/lupusgreaterOH
Become a Member One-year: $25 Lifetime: $200 lupusgreaterohio.org/get-involved
Host a Third-Party Event Do you have an idea to support the mission? Give us a call at
MAGALIVING WITH LUPUS MAGAZINE ZINE
13 14
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
In Honor of • Memorial Donation • Tribute Donation
14
LIVING WITH LUPUS MAGAZINE
• Combined Federal Campaign CFC #51890 • Creating Healthier Communities CHC #9963 • United Way Campaigns
Investing • 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 lupusgreaterohio.org/get-involved/donate or contact the office.
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
LIVING WITH LUPUS MAGAZINE
15
“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. 16
LIVING WITH LUPUS MAGAZINE
Practicing Mindfulness TO FIND JOY
BY: LESLIE VIZCARRA-TIERNEY LEAD PATIENT NAVIGATOR If you are having a difficult time finding joy, the best place to look is within yourself. An important part of looking within is to hold yourself accountable. It is being aware of all aspects of yourself and understanding not only what you are great at, but also what needs work. Part of this includes mindfulness. Mindfulness is the practice of being present and aware in each moment. Take a moment to stop and check in with yourself. This article is an exercise to help you be mindful. We may not always recognize the things we do that may be holding us back. Use these ten questions as mindfulness practice to aid you in finding joy. 1. Are you really that busy? Whether you realize it or not, the majority of people are simply too busy. Our calendars are jampacked with responsibilities like appointments, work, or school obligations. Scheduling doctors appointments, meetings, classes, deadlines, tests, evaluations, continuing education. And the list goes on. The stress of these obligations seems to take precedence over your time. They overflow into your personal life and invade your family. All of which creates unnecessary stress and pressure that you put on yourself. Joy takes effort. Start by prioritizing your schedule. Slow down and realize
that everything doesn’t have to be done at this exact moment. Start today by using the schedule in this magazine. A few helpful hints include:
• Slow down and break your time into ½ hour increments. • Look for areas that you can incorporate joy (maybe during your morning walk with the dog). • Wake up a bit earlier to “schedule” personal time (don’t forget to get enough sleep). • Maintain balance. If something doesn’t get done, it’s ok to do it later. Just prioritize what has to get done versus what can be done a little later. • Take time to eat proper meals (you can be mindful by enjoying each bite that fuels and nourishes your body). • Detach from your computer screen for a certain amount of time each day. Computers distract us from focusing on mindfulness and joy.
2. How connected are you? How are you spending any extra time you have in your schedule? Do you need to disconnect from the TV, computer, business of your life? Over the years our mobile devices, laptops, tablets, and phones have become a necessity. We feel lost when we forget our phone or
our device runs out of battery. Be honest with yourself. A simple first step to inspiring your own joy is to stop looking at other people’s content and create your own real-life content. Disconnect from your device and reconnect with people, a pet, get actual fresh air and get into nature. 3. How often do you exercise? By now, you will have been told by someone that exercise is critical to your health. Exercise is not just about physical fitness. It plays a larger role and significantly impacts your mental well-being. If you are short on time, even a 10-minute walk in your day is an opportunity to practice mindfulness. This allows joy to walk right into your life. It creates the space to just be and to live in the moment. Feel your body taking in the clean air and getting stronger. Take in the beauty that surrounds you, listen to nature’s melodies and greet the morning sun when you stroll. Stop and take a deep breath. Know that you did something amazing for your mind and body. Taking a walk outdoors can help reduce the stress of the day and work on your body’s natural endorphins to spark the joy and cheerfulness you desire. 4. How much sleep do you get? This can be a difficult task for some LIVING WITH LUPUS MAGAZINE
17
people. But you need to find a way to provide your body with the proper rest it needs. Your sleep quality affects your ability to find joy. Sleep deprivation affects your mood and can lead to additional health issues like depression and increased pain. The Lupus Foundation of America recommends that lupus patients get seven to nine hours of sleep a night. Please do yourself a favor and develop proper sleep habits. Be consistent with your bedtime and when you wake up. Most people set an alarm to wake up but you should also set an alarm to remind yourself to get to bed. Stop screen time ½ hour to an hour before sleep. Practice deep breathing. Take a bath with lavender or chamomile. Drink sleepytime tea. Make sure to take enough time to prepare for bed. 5. Are you grateful? Sometimes it’s hard to be grateful. We see people around us that have more and we become frustrated and even resentful. But it’s truly the little things that matter. Maybe you just reconnected with an old friend. Perhaps you just got that ten minute walk in! Maybe you went to the grocery store and found that new item you’ve been looking for. If we remember to say “thank you” for these little things, we create space for gratitude. This adds to our joy. Something else that can help us to be grateful is to recognize the small conveniences we have in our lives. Utilizing the free pick up at grocery stores gives you back some of your time and makes life easier! Think about how much of life’s little tasks have become more convenient for us these days. Have gratitude for these things. Better yet, write them down so you can see all of the things you are grateful for. This is an opportunity to create joy. 6. When was the last time you did something for someone else? A wonderful motto to live by is one that was created by Rotary International. It is to provide “service above self.” Such a simple concept of kindness that typically our 18
LIVING WITH LUPUS MAGAZINE
society overlooks. Many times we obsess over new trends or getting our hands on a hot new gadget. These material things may bring you a short burst of joy, but they will not truly move the needle in finding fulfilment and true joy. Acts of kindness to others do not have to be grand acts. Many small acts of service can amount to much more. Take a moment to hold a door open for someone. Provide a meal or two for the homeless. Help out your neighbor. Pay for someone else’s meal through a drive-through window. Volunteer at a nursing home or your favorite non-profit. Offering your time and showing loving kindness is the greatest gift to give that inspires joy for you and others. 7. Do you have any hobbies? Making time to learn something new or practice something you are passionate about can inspire great joy. Rediscovering something you love and taking time to do things you truly enjoy create moments of happiness. Think about what your interests are and then schedule an hour (or more if you can) each week to practice your hobby. 8. How often do you smile? Simply just having a happy facial expression brings about more joy. Adults may have mastered the skill set of a resting “witch” face. Try thinking about things that make you happy to put a smile on your face (your friend, a child, a pet). A simple smile to a stranger or a friend can inspire joy. Smiling more often throughout the day helps to uplift your mood. 9. When was the last time you laughed? Laughter is the sound of joy. If it is difficult for you to pinpoint the last time you had a good chuckle, adding laughter back into your life is a must. Ditch streaming action and drama movies. Look for comedies and funny sitcoms. Spend more time with animals or small children. Remove negativity from your life and do something silly. Like dancing in your living room to your favorite song. Life is too short to be so serious all the time. Let loose and bring on the case of the
giggles. Laughter is truly the best medicine. 10. What is your belief system? Sitting down and contemplating the universe is important. Take time to reflect on your own feelings and thoughts regarding spirituality. Are you a more religious or spiritual type of person? Make an effort to take inventory of what really matters most to you. Whether you have a formal belief system with religion or a spiritual belief practice, it is important to recognize that your life has great meaning and purpose. Our lives mean more than the mundane tasks and chores that we all have. We have a purpose and practicing your own belief system will help guide you to find the joy you personally seek. Remember to pencil time in to practice your belief systems. Understanding you are a part of a greater whole and recognizing our interconnectedness leads us towards loving kindness, which ultimately leads us to joy. Answering these questions can help guide you to look within yourself to find out if you are living the life you want to live. Finding joy in our busy lives is not always easy. But if you take time to be mindful and schedule time for yourself, it creates a foundation for joy. This gift needs to be cultivated, for it will last a lifetime. Once you find joy, offer it to others around you. By shining your light of joy, it can inspire others to do the same. Find what makes you happy. Try not to compare your life with others. Your happiness, your purpose, and your joy is unique to you. Find it and treasure it. Finding joy would be a great topic to share in one of our support groups. Or perhaps you would like to connect with one of our patient navigators. We would be happy to help you with either. The chapter is ready to listen and offer services that are helpful for you on your journey with lupus. Call the office ar 1 (888) NO-LUPUS or email us at info@LupusGreaterOhio.org to be connected with a group or patient navigator.
How Will You Spread Joy this Holiday Season?
Hourly Schedule 5
00
AM
30
6
00
AM
30
7
00
AM
30
8
00
AM
30
9
00
AM
30
10
00
AM
30
11
00
AM
30
12
00
PM
30
1
00
PM
30
2
00
PM
30
3
00
PM
30
4
00
PM
30
5
00
AM
30
6
00
AM
30
7
00
AM
30
8
00
AM
30
9
00
AM
30
10
00
AM
30
11
00
AM
30
12
00
PM
30
1
00
PM
30
2
00
PM
30
3
00
PM
30
4
00
PM
30 LIVING WITH LUPUS MAGAZINE
19
H O L I D AY C O L O R I N G P A G E
20
LIVING WITH LUPUS MAGAZINE
STRESS MANAGEMENT By: Yael Ross, MD
Stress is an unfortunately unavoidable part of life. Stress is a word that is difficult to define as it can look very different to each person who is experiencing it. Different people might also have very distinct reactions to the same stressful event (1). Although everyone experiences stress in different ways, stress can have a larger impact on those suffering from chronic illnesses, like lupus. One reason stress can have a greater effect on those with lupus is because stress can trigger disease flares (2-4). Stress has also been shown to negatively influence quality of life as well as mental abilities in patients with lupus (1,5). Because of all the negative effects stress can have, it is important to learn some techniques to help cope with stress. This article will go over some proven methods to try to help reduce stress.
Mindfulness Mindfulness is the practice of concentrating on being present in the current moment (3,6). Mindfulness has proven to be an effective coping mechanism in dealing with lupus related stress as well as with chronic pain (3,6). Despite the apparent simplicity of the concept, being mindful is actually quite difficult. It takes some work to be able to tune out the extraneous stimuli and just be present in the moment. Meditation, focusing on breathing, yoga, and paying attention to every body part from head to toe are some mindful exercises that can be done at any time of the day (3,6). The goal of mindfulness is to develop a positive and gracious attitude about current experiences and sensations (3,6). Being mindful helps to relieve the stresses related to dwelling on things that might have happened in the
past or worrying about things that might happen in the future. Support System Having a support system is beneficial for both physical and mental stress in people with lupus (7). There is a comfort that comes from not facing stressful situations alone, which is one of many benefits a support system can offer (7). Friends and family members who provide love and support are invaluable, but sometimes they might not understand the intricacies of living with lupus. Attending virtual or in-person (if available) lupus support groups is a great way to build a network of people who might have similar life experiences. However you might know them, having people in your life who support and encourage you is an incredible coping mechanism (7).
LIVING WITH LUPUS MAGAZINE
21
Sleep Improvement in sleep quantity and quality has been shown to reduce stress in people with and without lupus (8,9). When your lupus is being treated with steroids, they might make it particularly difficult to fall asleep (10). Taking the steroid pills in the morning (if ok with your physician) might help, but this type of medication can still have an impact on your ability to fall asleep. One way to enhance sleep quality is to exercise during the day (10). Exercise has the added benefit of improving both pain and mood. Limiting caffeine intake prior to bedtime is another way to improve sleep (11). Routinely scheduled sleep and wake times can also improve sleep patterns (11). Exercise In addition to helping with sleep, exercise has many other benefits for mental and physical health (11,12). Both aerobic and resist-
ance training exercises have been shown to help with fatigue, and mood in people with lupus (12). Benefits of exercise also include pain reduction and improvement in functioning (12,13). Exercise has many other advantages as well but starting an exercise program is a great way to reduce stress in your life. This is just a short list of a few things that have been studied and proven to reduce stress specifically in lupus patients. There are many other things not included in this list that might reduce stress as well. Because stress is something that can be different depending on the individual person that is experiencing it, any kind of hobbies or enjoyable activities that can help reduce stress are also specific to different individuals. The most important thing to remember is to do the things in life that bring you the most happiness as it is harder to be stressed when you are happy.
ARTICLE WRIT TEN BY: Yael Ross, MD Rheumatology MetroHealth Medical Center
CITATION 1. Rinaldi S, Ghisi M, Iaccarino L, Zampieri S, Ghirardello A, Sarzi-Puttini P, Ronconi L, Perini G, Todesco S, Sanavio E, Doria A. Influence of coping skills on health-related quality of life in patients with systemic lupus erythematosus. Arthritis Rheum. 2006 Jun 15;55(3):427-33. doi: 10.1002/art.21993. PMID: 16739209. 2. Roussou E, Iacovou C, Weerakoon A, Ahmed K. Stress as a trigger of disease flares in SLE. Rheumatol Int. 2013 May;33(5):1367-70. doi: 10.1007/s00296011-2292-1. Epub 2011 Dec 23. PMID: 22193224. 3. Taub R, Horesh D, Rubin N, Glick I, Reem O, Shriqui G, Agmon-Levin N. Mindfulness-Based Stress Reduction for Systemic Lupus Erythematosus: A Mixed-Methods Pilot Randomized Controlled Trial of an Adapted Protocol. J Clin Med. 2021 Sep 28;10(19):4450. doi: 10.3390/jcm10194450. PMID: 34640468; PMCID: PMC8509215. 4. Kozora E, Ellison MC, Waxmonsky JA, Wamboldt FS, Patterson TL. Major life stress, coping styles, and social support in relation to psychological distress in patients with systemic lupus erythematosus. Lupus. 2005;14(5):363-72. doi: 10.1191/0961203305lu2094oa. PMID: 15934436. 5. Plantinga L, Lim SS, Bowling CB, Drenkard C. Perceived stress and reported cognitive symptoms among Georgia patients with systemic lupus erythematosus. Lupus. 2017 Sep;26(10):1064-1071. doi: 10.1177/0961203317693095. Epub 2017 Feb 23. PMID: 28420055; PMCID: PMC5494014. 6. Majeed MH, Ali AA, Sudak DM. Mindfulness-based interventions for chronic pain: Evidence and applications. Asian J Psychiatr. 2018 Feb;32:79-83. doi: 10.1016/j.ajp.2017.11.025. Epub 2017 Dec 5. PMID: 29220782. 7. Mazzoni D, Cicognani E. Social support and health in patients with systemic lupus erythematosus: a literature review. Lupus. 2011 Oct;20(11):1117-25. doi: 10.1177/0961203311412994. Epub 2011 Aug 9. PMID: 21828159. 8. Palagini L, Mauri M, Faraguna U, Carli L, Tani C, Dell’Osso L, Mosca M, Riemann D. Insomnia symptoms, perceived stress and coping strategies in patients with systemic lupus erythematosus. Lupus. 2016 Aug;25(9):988-96. doi: 10.1177/0961203316631630. Epub 2016 Feb 13. PMID: 26876691. 9. Moraleda V, Prados G, Martínez MP, Sánchez AI, Sabio JM, Miró E. Sleep quality, clinical and psychological manifestations in women with systemic lupus erythematosus. Int J Rheum Dis. 2017 Oct;20(10):1541-1550. doi: 10.1111/1756-185X.13081. Epub 2017 Apr 19. PMID: 28425178. 10. Da Costa D, Bernatsky S, Dritsa M, Clarke AE, Dasgupta K, Keshani A, Pineau C. Determinants of sleep quality in women with systemic lupus erythematosus. Arthritis Rheum. 2005 Apr 15;53(2):272-8. doi: 10.1002/art.21069. PMID: 15818653. 11. Cheek RE, Shaver JL, Lentz MJ. Lifestyle practices and nocturnal sleep in midlife women with and without insomnia. Biol Res Nurs. 2004 Jul;6(1):46-58. doi: 10.1177/1099800404263763. PMID: 15186707. 12. Bogdanovic G, Stojanovich L, Djokovic A, Stanisavljevic N. Physical Activity Program Is Helpful for Improving Quality of Life in Patients with Systemic Lupus Erythematosus. Tohoku J Exp Med. 2015 Nov;237(3):193-9. doi: 10.1620/tjem.237.193. PMID: 26490344. 13. Lu MC, Koo M. Effects of Exercise Intervention on Health-Related Quality of Life in Patients with Systemic Lupus Erythematosus: A Systematic Review and Meta-Analysis of Controlled Trials. Healthcare (Basel). 2021 Sep 15;9(9):1215. doi: 10.3390/healthcare9091215. PMID: 34574989; PMCID: PMC8468902.
22
LIVING WITH LUPUS MAGAZINE
RESEARCH NEWS STUDY IDENTIFIES NEW GENETIC LINKS TO LUPUS New research has identified a few specific gene variants associated with lupus. A gene variant is a permanent change in the DNA sequence that makes up a gene, which can sometimes cause disease. The latest findings suggest there are five different gene variants that may promote the autoimmune response in lupus, in which certain immune-system cells mistakenly attack the body’s healthy cells. Lupus is difficult to diagnose, especially in the early stages. This study helps pave the way for potential
genetic testing in the future to help identify people at high risk for the disease. Lupus is a complex disease that is likely caused by several interacting features. For example, we know that inherited genes, environmental exposures (such as certain medications, severe exposure to ultraviolet rays, perhaps certain viral exposures at key times), and female hormones all likely contribute to the development of lupus. No single gene or group of genes has been proven to cause lupus. Lupus does, however, appear in
certain families, and when one of two identical twins has lupus, there is an increased chance that the other twin will also develop the disease. These findings, as well as others, strongly suggest that genes are involved in the development of lupus. To learn more about lupus and genes or to read the research study visit our website at https://www. lupusgreaterohio.org/understanding-lupus/news/
RESEARCH IDENTIFIES FOUR DIFFERENT LUPUS SUBGROUPS New research finds there are four distinct subtypes of lupus based on one’s autoantibody profile. Autoantibodies are types of molecules produced by certain immune-system cells that attack the body’s normal cells, and there are several different types of autoantibodies that commonly occur in lupus. This latest study shows that one’s autoantibody profile (the mix of specific types of autoantibodies one has), along with the types of genes they have, can identify different subgroups within lupus. Researchers analyzed data from 911 people with lupus. They looked at 13 different lupus-associated autoantibodies, gene types
and clinical symptoms and diagnoses and discovered four distinct lupus groupings, or “clusters,” each with its own predominant autoantibody profile and a strong association with a specific gene: • Subgroup 1 was more likely to present with discoid lesions (disc-shaped skin damage) • Subgroup 2 was most commonly characterized by nephritis (kidney disease) • Subgroup 3 experienced more vascular events (like stroke or heart attack) • Subgroup 4 was the least common cluster, included the fewest number of males and
was associated with the highest age at lupus diagnosis
These four distinct lupus subgroups suggest that there may be several different disease pathways involved in the development and progression of lupus, which could influence how people with the disease are diagnosed and treated in the future. To learn more about lupus subgroups visit our website at https:// www.lupusgreaterohio.org/understanding-lupus/news/
LIVING WITH LUPUS MAGAZINE
23
W H AT I S A PAT I E N T N AV I G AT O R ? Patient navigators are trained individuals that are able to help patients in finding resources and assistance. They work with patients to overcome barriers to care and help navigate the complex medical system. For example, a patient may have trouble scheduling an appointment, or going for lab work, or affording a co-pay. The patient navigator helps identify the reasons why a patient may be having trouble and help craft solutions to the problems that prevent them from getting appropriate care. Patient navigators are vital in the world of healthcare. They establish partnerships with community organizations so that patients can be connected with resources to help them manage their disease. They build trust within the patient and physician continuum and connect patients with clinical trials. They are connectors and educators. Patient navigators are guides and friends during the journey with lupus. 24
LIVING WITH LUPUS MAGAZINE
The Lupus Foundation of America, Greater Ohio Chapter’s (LFA, GOC) patient navigators stand ready to assist Ohio’s lupus patients in need of assistance. They are a team of professional and compassionate individuals who are trained specifically to work with lupus patients. Many are nurses or social workers, and some are even patients! One of the main duties of an LFA, GOC patient navigator is to reach out to patients to make wellness calls. It is important to the Chapter to check in with lupus patients across Ohio to ensure, especially during the isolation of COVID-19, that they are thriving and aren’t encountering barriers to care. The LFA, GOC is dedicated to service, advocacy, and education of the Chapter’s constituents and the public on what living with lupus is really like. A patient navigator is an ally, a support system and a resource. They do more than assist patients with hardship. They make sure that the Chapter is
doing everything possible to help patients live a happy and joyous life despite living with a chronic illness. Lupus is often a lonely and isolating disease. But you are not alone. We are building a lupus community that we want you to be a part of. There is no “I” in “lupus” but there is “us.” Patient navigators are available in different regions of the state of Ohio so they are familiar with the areas patients live in. If you would like help contacting a patient navigator, call the office at 1(888) NO-LUPUS (1-888-665-8787) and the Chapter staff will help find the right navigator for you.
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:
• Lisa Evans • Katie Gugle 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.
• Aletha Acree • Kari Kepic • David Santoli • Rachelle Yarnell • Kathy Holmes • Adrienne Fernandez • Margaret Lizotte • Ryan Pike • Shannon Cabot
LIVING WITH LUPUS MAGAZINE
25
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.
Stephanie Holmes
Administrative Assistant Stephanie@lupusgreaterohio.org
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.
Lindsay Rinehart
Marketing Coordinator Lindsay@lupusgreaterohio.org
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. LIVING WITH LUPUS MAGAZINE
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.
26
Kathy Holmes
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!
Kay Adams
Melissa Betts
Fundraising Fundraising & Events Coordinator Melissa@lupusgreaterohio.org Kay@lupusgreaterohio.org I joined the team here at LFA, GOC I am a people person and an unrelentin 2021 after having served in the ing communicator. I talk fast and I like non-profit sector for 15 years. It has action. I was drawn to the LFA, GOC to been a pleasure to get to know some work in events and promotions but I amazing lupus warriors and they conalso harbor a soft spot for editing and tinue to be my motivation in my fundproofreading. I have worked in various raising role. Their strength and deteraspects of events for a while now mination inspire me to do everything and I am excited about the shift to in my power to support the fight. In non-profit events and development. my personal life I enjoy spending time Among serving the lupus patients with my husband of 24 years and our of Ohio, my passions also include, pets, three dogs and one cat. I am also reading, traveling, snowboarding, a the very proud mother of three adult never-ending search for the perfect children, Andrew, Philip and Emma, chocolate chip cookie, and loving my all of whom are serving our country in dog. LIVING 27 theWITH UnitedLUPUS States MAGAZINE Military.
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
