Living With Lupus Issue 5

Living

ISSUE 5

With Lupus

SELF-CARE HACKS PG. 18 THINGS MY MOTHER SAID PG. 20 COVID-19 VACCINE PG. 25

Suzanne For this edition of our Lupus Magazine, we would love to honor all the mothers.

A bit of trivia. Do you know when and how Mother’s Day started?

Per Wikipedia: The modern holiday of Mother’s Day was first celebrated in 1907 when Anna Jarvis held a memorial for her mother at St Andrew’s Methodist Church in Grafton, West Virginia. St Andrew’s Methodist Church now holds the International Mother’s Day Shrine. Her campaign to make Mother’s Day a recognized holiday in the United States began in 1905, the year her mother, Ann Reeves Jarvis, died.

Anna Jarvis had been a peace activist who cared for wounded soldiers on both sides of the American Civil War and created Mother’s Day Work Clubs to address public health issues. She and another peace activist and suffragette, Julia Ward Howe, had been urging to create a Mother’s Day dedicated to peace.

Forty years before it became an official holiday, Ward Howe had made her Mother’s Day Proclamation in 1870, which called upon mothers of all nationalities to band together to promote the “amicable settlement of international questions, the great and general interests of peace.” Anna Jarvis wanted to honor this and to set aside a day to honor all mothers because she believed a mother is “the person who has done more for you than anyone in the world.”

That last sentence is so true. To this day, I tell my kids, even though they are grown, I am the one that has done more for you, and no one will ever love you more.

As I look back on my own life, I often think of my mother. We lost her a few years ago and only recently were finally able to have her stone placed. I had no clue what a project it was; picking one, ordering it, and paying for it has many challenges. But this stone was so important to my siblings and me because it was a monument to her, and we wanted to give tribute to a life of love she gave us. Now that she is gone, I wish I had more time to spend with her. I did not know what a hole in my life her absence would be.

During the month of May, I am confident that happier days are ahead for all of us. Looking back over the past year, the atmosphere in the whole world has everyone in a funk. None of us will ever forget the past presidential campaign, raid on the Capital, Black Lives Matter, The Me-Too Movement, a global pandemic, economic crisis, and mass funerals. So let us all turn to Spring that brings new beginnings.

With Spring in the air and hopes of vaccines, we are all looking forward to a new normal. Some of you with elderly parents were most likely limited to seeing them and longed to hug them.

If you still have your mom, be sure to place her on a pedestal. She deserves it. She has one of the most challenging jobs known to humankind. It is hard for many of us to understand her job description, mainly because I think they make it up as they go along in life. I want you to think back and reflect on how you treated your mom. This could be a daunting task for many of us. After all, what age were you before you actually started listening to her wisdom? The good news is that if you still have your mom, you have the opportunity to make wonderful life experiences and memories.

Now I recognize that some people do not have good relationships with their moms (no judgments here); although it saddens me, I can hope and pray that you all find peace in the world. I hope that if you become a mom, you will rise above life’s adversity and glow.

God knows I had my share of disagreements with mom in her lifetime. The thing that really ticks me off is now that I am older and have kids of my own, she was right about many things. Not only was she right, but I also find myself telling my kids the same things.

I was so scared one day, I walked past the mirror, and as I looked in, I said, “MOM is that you?” That goes back to the old theory that our parents mold us in our younger years. So, for those of you with young children, beware of what you say and how you say it to them. You never know if you are making a mold of yourself. That could be a good thing or maybe not.

I suggest you take each day and mark down a memory of you and your mom during this month. It could be good or bad. I keep remembering the sayings that stick in my head from my mom. I asked about 100 of you to send some of those famous quotes from your moms to me. Was I pleasantly surprised? Indeed, I was. Your famous sayings flooded my inbox. I hope you all delight in the ones we are posting in this issue. Be sure to share this issue with others. Many will find great warmth and humor in all the sayings.

Remember, you never know when you are making a memory. So, watch what you say, how you say it, and when. Remember that one too?

I would be remiss if I did not say I was shocked that I lived long enough to be a mother and a grandmother.

Diagnosed with lupus at the age of 27, the doctors told me that I would most likely die from lupus, and it would be soon. I tell you this because I want to share that experience. That was a rough few years for me and a story for another time. When faced with that possibility, you make all kinds of life changes. Here I am, now almost 70, HA! I really tricked those doctors. Still, it was clear to me that each day was a gift. It was also clear that I had to make some serious choices on how to live my life. Those choices would bring consequences, some good and some bad. Living with a chronic illness like lupus was a tall task. It was scary and lonely. Behold, an angel stepped up; she had support, education, and love. She carried me when I could not walk. She laid next to me when I could not sleep. She prayed with me when I was afraid.

It was my mother that carried me through the storm. Imagine that. Yes, I believe moms are angels to protect us during our lives. They spread their wings and wrap them tightly around us. They feed us, clean us, nurse us, guide us, and love us unconditionally. If you have been to my office at the Chapter or my home, you know me well enough to know that I surround myself with angels. I do not collect angels.

God insists on other people collecting them and sending them to me. Last count I had over 500. I always considered my mom an angel. Now she is singing in the angel choir from the heavens above. She is still holding me tight from a distance but never really far away.

What can we learn from our mothers? How can we pay tribute to our mothers? Think about it. Share it.

Start with love and end with respect.

Suzanne Tierney President & CEO Lupus Foundation of America, Greater Ohio Chapter

Pg. 4 ExactCare Pg. 5 Lupus Awareness Month Pg. 6 - 12 Patient Stories: Mothers and Daughters Pg. 13 - 14 Get Involved

Pg. 15 - 19 Self-Care Pg. 20 - 22 Things My Mother Said Pg. 23 Walk to End Lupus Now® Pg. 24 Research News Pg. 25 - 26 COVID Vaccine Pg. 27 - 28 Podcast and Blog Pg. 29 Recap Minority Health Month Pg. 30 Staff Page

PATIENT STORIES

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THINGS MY MOTHER SAID

29 RECAP MINORITY HEALTH MONTH

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WALK TO END LUPUS

NOW ®

CONTENTS

Pg. 1 - 2 Letter from Suzanne

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.

May is Lupus Awareness Month! This year, the Ohio lupus community comes together once again to create awareness and raise funds to fuel the mission and put an end to the cruel mystery that is lupus.

POP Day All month long, we will be sharing facts and statistics to educate people about lupus.

Fact #1: On average, it takes nearly six years for people with lupus to be diagnosed. In support of lowering that 6-year wait, will you make a small donation of $6? With your donation, you will receive a balloon.

The Challenge: Put on purple for POP Day, record a video of you sharing a fact about lupus, and pop your balloon!

Take the POP Day Challenge!

Important Dates: • • •

World Lupus Day is May 10 The Cleveland Terminal Tower will be lit up purple on Friday, May 14.

The Virtual Lupus Summit: Path to Empowerment will take place on Saturday, May 22.

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PAT I E N T S TO R I E S :

Mothers + Daughters

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started leading them in the area.

RHONDA &

N I K K I I have met a lot of people in my lupus journey. If I don’t remember your name, I will remember your heart. Also, I am a jewelry fanatic, so I might remember the jewelry you had on too. All kidding aside, in my earlier years when I was on the road fighting the war on lupus, my travel took me to Cincinnati. It was there I met a young mother by the name of Rhonda Roberts. I was there with a facilitator, and we were training social workers from Cincinnati Children’s Hospital on how to conduct lupus programs for the children in their community.

projects. If you knew Rhonda, you knew she loved to fundraise.

She was the driving force behind the first walk in the area. She hosted it and put it on for years in Middletown. She was not happy when we moved the walk to Cincinnati. Still being a team player and aiming for the higher good, she took on Cincinnati too. Rhonda’s spirit was magnetic; she was the pied piper of fun. Everyone followed her.

Her daughter Nikki was always by her side. Rhonda had such a

We finally hired her as a Regional Coordinator for the Cincinnati and Dayton area. She loved her purple jacket and wore it proudly. She had a hectic schedule caring for Nikki, and I was pretty surprised to learn that she had her own health issues.

When she was younger, she was an EMS worker but was forced to retire because of her health. You would have never known it from her energy. She amazed me with all she wanted to do and all she could do.

Let us not forget Nina, Nikki’s younger sister. She was just a tiny little thing and, thankfully, healthy.

Together with their grandmother, they were like jelly beans in a candy dish, so colorful and sweet.

As years passed, Rhonda continued her mission not only for the LFA but to find help for her daughter, who continued to get worse.

Nikki had so many hospitalizations and close calls we were constantly

While there, we also held a town hall meeting with people from the area. Across me sat this perky little blonde lady accompanied by two lovely little girls. She was full of spirit and had plenty of questions.

She was very educated about many medical topics. I learned that her young daughter was diagnosed with lupus, and she was on a mission to either cure her or end lupus. It was an extraordinary meeting, and led to a collaborative working relationship and friendship that lasted many years and made a tremendous impact in the lives of lupus patients.

Rhonda was actually from a small town between Dayton and Cincinnati called Middletown. I learned early on that people in Dayton and Cincinnati would rather not play in the same sandbox. Rhonda was full of fun stories about the two cities.

As she became more involved with our chapter, she worked in all three cities but really would have rather just stayed in her small town where she could rally family, friends, local business, and many local clubs to aid her in raising funds for lupus

heavy heart when it came to Nikki.

Nikki never really got a break from lupus. She was always fighting against one challenge or another, and Rhonda was always by her side. She exhibited a strength you seldom see. So strong and feisty. She had a lot on her plate when it came to caring for Nikki.

She stayed the course. She was constantly calling doctors and researching on her own. She knew the value of support groups and

afraid of getting that dreaded call we get too often at the chapter.

I often reflect on how wonderful the world would be with more people like Rhonda. Giving of self and always seeking for a better way to do things.

Rhonda and Nikki both took trips to Washington D.C. to be advocates for everyone with lupus. They met with legislators and shared LIVING WITH LUPUS MAGAZINE

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their stories with them. They were so proud to be part of the success stories that advocacy brings to our world of lupus.

To this day, Nikki, although still very challenged with multiple autoimmune issues, makes the time to travel to Columbus to be a strong and ferocious advocate for all of us in our fight against lupus.

Nikki is the facilitator today for many of our programs in Dayton.

Many of you know her. She leads a group in Dayton and does the telephone support group monthly.

We know we can call on her, and if able, she will assist us in many projects. She is deeply knowledgeable about lupus and living with it.

A real shocker came a few years ago when Rhonda called and said she had been diagnosed with lupus. What? We seldom see this.

But it does occur. How could we help the helper? She slowed down a little and leaned on a sweet

man named Joe. This whole family is a blessing to our chapter. They give and give so much.

You cannot imagine the shock wave that hit our chapter when we received a call from Middletown about this family. We were so fearful that Nikki had another serious issue. We were thankful that she was ok. But, it was Rhonda. The mother that led the way in the southern part of the state for lupus and cared immensely for hundreds of lupians in her area, who worked tirelessly to guide her daughters’ journey of lupus, died suddenly and unexpectedly.

We never know what life is going to throw our way. How things like this happen is unknown to us all.

But we know that this was an exceptional mother, not only to Nikki and Nina but also to all of us that Rhonda mothered while supporting and educating all those she met in Ohio on the lupus journey

we shared. Rhonda, even in death, was focused on research. She donated her body to lupus research so that we might continue to learn from her even without her.

When I think of fabulous mothers, Rhonda comes to the top of my list. I know she is looking from the heavens and saying to us all, “job well done, keep at it.”

To Rhonda, we say thank you, and we have grateful hearts for her being a trailblazer here in Ohio.

Happy Mother’s Day to one of the best moms I know.

We remember a life of service that she shared with us. We give her daughters Nikki and Nina special thanks for sharing her with all of us.

My Mom would say, “it is not that you were here that mattered. It’s what you did that you will be remembered for.”

Written by: Suzanne Tierney

“I often reflect on how wonderful the world would be with more people like Rhonda.”

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STEPHANIE

& KATHY My mom was diagnosed with lupus at the age of 29. Two years later, she was in the hospital for weeks at a time. Her doctor put her on Cytoxan, which is a chemotherapy medication. Because of the Cytoxan, her doctor said she wouldn’t be able to get pregnant, but here I am! My mom had me when she was 35, so I never saw her when she was sick, but to this day, I can still see how lupus affects her.

I went to the mall a lot, but she would get tired very quickly and we would have to leave much earlier than I wanted to. I remember getting frustrated but other times I was genuinely concerned and I didn’t understand why my mom was always so tired. As I got older and started to learn more about lupus I was a lot more proactive about spreading awareness be-

cause many of my peers had never heard of it. In college, I gave presentations on lupus and utilized lupus in almost all of my projects.

My original understanding of lupus was that it was a disease that only really affected the skin and made you tired. I thought that if my mom stayed out in the sun too long, she would get a nasty sunburn or rash. It wasn’t until I was older that I understood there was a lot more to the disease. Growing up around, and now working at, the LFA, GOC, I have learned so much about lupus, and I have a better appreciation for what my mom, and other patients, have to go through. I don’t think I will ever fully understand lupus; who does?

But I am so thankful to be able to learn, spread awareness, and listen to other patients’ stories. If you would like to share your story, please call me at the office.

I don’t remember how old I was when my mom told me about her lupus, but I know I was pretty young. I didn’t understand it at first, and because I didn’t see my mom at her worst, I didn’t think it was that severe. I learned more about the disease by seeing rather than hearing. Whenever we went to the beach or the pool, my mom had to wear a sunhat, or we had to find the shadiest spot. I always wanted my mom to come into the water with me, but she told me that she could only go in for a little bit because she can’t be in the sun too long. I remember being frustrated because I saw all of the other moms in the pool with their kids. Luckily my dad would step in when he could.

As a teenager, I loved going to the mall. I loved walking around and taking my time. My mom and

L U P U S

FROM A DAUGHTER’S PERSPEC TIVE MAGALIVING WITH LUPUS MAGAZINE ZINE

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DEBRA

DEVONNA GLENN My lupus journey started when I was diagnosed at 17 years old, but my mother thinks it started way before then. At the age of six, I began having terrible grand mal seizures. I was in and out of the hospital and received spinal taps, but no one could figure out the cause. As I got older, I started to realize that when I was in excruciating pain, a seizure was coming.

I have always had an “aura” that let me know it was starting, and I could warn people around me with enough time for them to catch me as I fell.

I was blessed to have a mother who kept me at the doctor’s until she got answers and instructions on what she needed to do. My mother also had lupus, but ultimately died from breast cancer.

She was good about us being each other’s support systems.

We attended chronic pain classes together and we understood each other’s fatigue and arthritis pain.

When my ankles were so swollen that I could barely walk, she could relate. The pain is rougher now that she is no longer with me because many people just don’t understand. Some days are just so unbearable, especially in the winter months when arthritis and join Many days, I wish I didn’t have such a high pain tolerance because

pain are worse. I have light sensitivity so bad that my doctor wrote me a prescription to get limo tint on my truck. it is not healthy. I feel better moving around, rather than being still and feeling all the pain. I retired after working 33 years on my job because it was becoming too hard to push myself to walk to the beat of someone else’s drum. I thought it was time to make my own beat and have some self-loving in my life.

“It is so nice to have family and many friends who care, even if they don’t always understand.”

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It is so nice to have family and many friends who care, even if they don’t always understand. I am 61 years old and the lifelong struggle has been extremely hard.

I can’t ever remember or say I went a whole week pain-free. I pray that, even if not in my lifetime, a cure will be found to help future lupus warriors.

I was diagnosed with lupus in the early 90s after years of searching for answers. I saw so many doctors who made me feel crazy by saying it was all in my head or that I was just looking for attention. My struggle began when I first experienced joint problems in my teenage years, but they would come and go. Eventually, joint pain became an everyday occurrence, but I tried to put on the back burner. I had been very athletic throughout high school and college which led to several knee surgeries so I figured this was to blame. Life went on! In my late 20’s I started developing hot swollen joints, crazy rashes and horrible fatigue. An early diagnosis was JRA, but that didn’t explain the facial rash and other unusual symptoms. Many were just a guess.

Sadly enough, I was even told I was imagining things or doing something to myself. That rash is what finally led to my lupus diagnosis. I was admitted to the hospital with the most severe rash I have ever had, abnormal labs, and unbelievably tender, swollen joints. Teams of physicians flooded my room, each with their own notebook and opinion. After all the facts were in, including a positive facial biopsy, the final diagnosis was SLE. My children were about 10 and 12 when I was officially diagnosed with lupus. I was relieved to have a diagnosis, but this was just the first chapter of my journey.

Family means everything to me.

Faith, family, and friends is an overused saying, but that is what has gotten me through 50+ surgeries, way too many hospitalizations, and anything else life and lupus throw

LISA OWEN

P E R R Y

my way. I married young and had my first two children shortly after.

It was a crazy, busy, time as my husband and I tried to manage our family, jobs and basically, our new lives. I was determined I could do it all and tried to do everything for my boys, but I continuously needed help. Which made me feel like I was failing them. But I did all I could for my family. When I was

“Faith, family, and friends is an overused saying, but that is what has gotten me through 50+ surgeries, way too many hospitalizations, and anything else life and lupus throw my way.”

feeling well, I volunteered as much as possible at schools and other activities. Unfortunately, my lupus caused me to lack dependability and I’m sure, at times, I let them down. Luckily, their grandparents lived nearby. Without their support, I don’t know what I’d do.

Lupus has changed my life dramatically. But as it has taken things away, it has given things back. I spent years working as a medical technologist, but lupus made it hard to hold a job. The multiple surgeries, hospitalizations, and sick days forced me to go on disability.

Family support got us through my frequent medical issues. And family doesn’t just mean blood relatives. Because so many people helped me and I was so grateful, I would open my home to those in need. Looking back and trying to stay positive, despite my health issues, it allowed me to be home MAGALIVING WITH LUPUS MAGAZINE ZINE

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with my children and watch the neighborhood kids before and after school so that their parents didn’t have to pay to send them to daycare. I couldn’t work, but others had to. I found it important to help others when I could, and for that reason, many of my kids’ friends call me mom. Lupus has made me understanding and sympathetic to others and their situations. But it not only made me more sensitive to these issues, it made my family look at things that way also. Lupus has taught me so much!

One of my biggest surprises came in my late 30’s. The boys were approaching their teen years when I found out I was pregnant!

Something I was told, after several miscarriages, could never happen.

My knee was fused, my lupus was full blown and years of multiple medications trying to halt the progression of this disease had wreaked havoc on my body. The first doctor I saw told me to terminate the pregnancy and forget it ever happened. So, I found a new doctor! My pregnancy was rough, to say the least. I had an IV in my chest where I received fluids and transfusions. I relied heavily on family to keep things going. My daughter was born at 35 weeks!

Family support with lupus is so important. Everybody pitched in to raise this baby. She couldn’t have asked for two better big brothers.

My mom was my angel for there were times that I couldn’t even get off the couch. I’ve had so many hospitalizations and she was there for me 100% of the time. I still have a lot of guilt. I second guess myself.

As much as I did, I still feel I could have done more!

Today, my children are grown and are out on their own. I’m sure they were angry at times. Wouldn’t you be? But I’m amazed by my three fantastic children. And now I also have a great daughter in law, my grandson and the love of my life, James, and a granddaughter on the way. They all live within 20 minutes of me, as does my 87-yearold mother. These people keep me going. My guardian angels. I still do as much as I can. Family dinners 12 9

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and other gatherings are extremely important to me, and I’ve always been the party and event planner.

One important thing I realized while writing this is how the circle keeps going around. My daughter was planning a shower for her sister-in-law and declined the help I offered. I might have been a tiny bit upset until I saw that she had stepped up just like I stepped up for my mother. We need family.

That’s how we learn. My older sons (39 and 36) have done so much to help their younger sister (24) and they’ve all done so much for me!

I’m so proud! And whatever I can do for them, I will.

I love research and medicine, and I am determined to learn all I can about this mysterious disease.

Not only to help myself, but to share my knowledge with others. I became a patient counselor in pain management and chemical dependency. I have led lupus support groups and still talk to many other patients online, by phone, and at speaking engagements. I have been able to reach out to others

and share my strengths, experience and hope so that maybe, not in my lifetime, but soon, there will be a cure! Lupus has taken its toll. I have had 50+ surgeries, including open heart for endocarditis (due to MRSA, which I’m constantly fighting.) I have had to slow down, but I will not stop! I am strong! As a patient, and as a healthcare professional (I’m a medical technologist and was studying to be a physician assistant-lupus got in the way) I have a unique way of looking at things. Sharing my knowledge, strength, and hope, I will do my best to educate the public so we will find a cure and others won’t have to go through what I did. I have been called a “miracle, unbelievable, amazing” but I’m not!

Everybody has their cross to bear.

With the support of family, friends, my faith, and a positive attitude (most of the time), I will be ok.

Because when it comes down to it, all I have is what everyone else had, today. I live my life one day at a time!

“...when it comes down to it, all I have is what everyone else had, today.”

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

In Honor of • Memorial Donation • Tribute Donation

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• 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 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.

6 Self-Care Dimensions

TO HELP LIVE YOUR BEST LIFE

Self-care is a conscious action taken to promote physical, mental, and emotional health. There are many aspects to self-care. Consider self-care as deliberate actions that are a part of our everyday tasks.

Like ensuring you get enough sleep every night or stepping outside for a few minutes for some fresh air. Self-care tasks can be assessed as a multidimensional process of engaging in strategies that promote your health and enhance your overall well-being.

Self-care is essential to building resilience and pivoting away from stress. You can work on eliminating stress daily. When you actively take care of your mind and body, you practice a daily ritual necessary to live your best life. Self-care is a daily task, just like brushing our teeth or preparing food. We would never purposefully forget not to do these daily tasks.

Unfortunately, many people make excuses. Making statements like, “I don’t have time for that.” Or “I cannot meditate. I could never sit there and do nothing.” Many people view self-care as a luxury rather than a priority. Yet, it is the same naysayers that suffer from feeling overwhelmed, tired, and ill-equipped to handle all of life’s challenges.

Being mindful of our self-care can help during difficult times or when a flare arises. It is essential to assess how you are caring for yourself. There are six dimensions

to focus on to ensure you care for your entire mind, body, and spirit.

Suppose you think of a wheel or a tier. For the wheel to roll correctly, a few factors need to be in check.

There should be no holes, leaks, or tears. Routine maintenance is required to ensure integrity. If one area gets overused or seems to be overinflated, it makes a bumpy ride. What will happen over time is the wheel will break, and repair or replacement will be necessary.

There are six self-care areas to focus on: physical, social, professional, psychological, spiritual, and emotional. The center of the wheel is you. We need to balance these dimensions to maintain a healthy, well-rounded you. Let’s look into each aspect.

1. Physical Self-Care You need to take care of your body if you want it to run efficiently.

There is a strong connection between your body and your mind.

When you care for your body, you feel and look your best. To work on your physical self-care, ask yourself: - Are you getting enough quality sleep?

- Is your diet fueling your body well?

- Are you taking charge of your health?

- Are you getting enough exercise?

The central part of physical selfcare is how you fuel your body.

Treat your body with kindness, respect and honor your body like a temple. Caring for your body includes tasks like attending

your appointments, taking your medication as prescribed, and managing your health as a part of self-care. Even simply relaxing and taking time for a massage can help the physical body.

2. Social Self-Care It is easy to run out of time and neglect making time for our friends. Over time that failure can sever a relationship. Socialization is a crucial part of your well-being.

Each one of us has different social needs. The goal is to figure out your needs and make time in your schedule to create an enjoyable social life. Questions to ask yourself: - Are you getting enough face-toface time with your friends?

- What do you do to nurture and build your relationships with your friends and family?

Certainly, our social life has significantly transformed this past year, making it so important to reach out to your friends and family now more than ever. To have a good friend, you need to be a good friend.

3. Professional Self-Care Professional self-care involves being conscious of your workload stress and balancing your tasks.

You need to take notice of your well-being during your daily work tasks regularly. Relegating stress at work and using de-stressing activities on breaks and outside of work LIVING WITH LUPUS MAGAZINE

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can help create a better balance.

We spend a great deal of time at work, right? When we do not make time for ourselves consistently, the stress can follow us home.

On the same note, some people may not be able to hold consistent work because of health issues. For many, this could be a void in their life that they want to fill. There are ways to still contribute to the workforce. Some people are unable to hold a full or part-time job.

Looking for opportunities with volunteering or mentorship programs can help to fill that void. Getting involved with organizations is a great way to maintain a professional aspect and fill that self-care need. Some things to think about: - Evaluate your workload.

- Create a healthy workspace.

- Differentiate work time with personal time.

- Stay organized.

- Start with small changes to get back into the workforce by volunteering.

By evaluating these bullet points, you can identify the areas to work on and improve your situation.

Successfully managing a work-life balance is key to working on your professional self-care, like working on taking a walk on your lunch break. You can start incorporating deep breathing exercises during the day and talking with your colleagues about managing the workload. Alternately, take the initiative to reach out to your favorite organization to see if there is a way you can contribute. These are all great attempts to make changes.

4. Psychological Self-Care The way you think and the thoughts that influence your mind are a part of your mental health.

Psychological self-care includes

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doing things that keep your mind strong, like brainteasers or learning something new. Or maybe watching an educational program online or a documentary on television can inspire you to learn something new.

Psychological self-care also includes doing things that help you stay mentally healthy. Practicing self-love or removing negative self-talk are examples that we previously wrote about in Living with Lupus Issues 3 and 4. These are great psychological tools to help you maintain a healthier inner dialogue and better self-care.

Here are a few questions to consider when you think about your psychological self-care: - Do you spend enough time on activities that stimulate you mentally?

- Do you practice healthy self-talk?

Focusing on your psychological self-care can prompt you to realize that reaching out for help may be necessary. Simply recognizing that you may need help from a mental health specialist or joining a support group to help you build healthy psychological self-care skills.

5. Spiritual Self-Care Nurturing your spirit is not just about religion. Research shows that people with a solid connection to faith and or spirituality generally live a healthier lifestyle.

Practicing a deeper connection and understanding of religion or the universe can help to deepen a sense of self-meaning and purpose. Practicing spiritual self-care can be enjoying a deep meditation, attending mass, or practicing a routine prayer like a novena or saying the rosary. Whether you are religious or more spiritual, have

you given any thought to your spiritual life? To help reflect, ask yourself: - What questions do you have about life and your experiences in life?

- Do you feel fulfilled with your spiritual practices?

Taking the time to reflect on these questions and answers will give you a better understanding of the areas you can explore to build stronger spiritual self-care.

6. Emotional Self-Care Our final dimension of self-care is emotion. Learning techniques to manage strong emotions like anger, anxiety, and sadness are useful life skills. How we manage or express our feelings is essential. You do not want to bottle up feelings or ignore how you feel.

One way or another, those hidden emotions will express themselves in an unhealthy way. Ask yourself these questions to help identify your strategy: - Do you practice a healthy way to process your emotions?

- Are there certain activities that help you cope or manage your feelings?

After you identify your coping strategy, assess if you would consider it a healthy way to manage and process your feelings. Talking through your emotions with a close support person or making time to enact coping strategies is essential to incorporating healthy emotional self-care into your life.

After reading this article, take the next step by identifying your self-care wheel. You are the center of the wheel and deserve a life of balance and joy. Look into each dimension and fill in your self-care practices with each practice you

currently do. Determine if there are areas that you need a little help.

Or, if you find yourself neglecting some of the six self-care dimensions, take time to reevaluate each section and see where you can make adjustments. Remember to start with small changes. Look at your schedule and place time in your day just for you.

Our Chapter is here to talk with you and support you. We have patient navigators ready to help.

We are here for you on your journey with lupus. We are passionate about helping you find the right path to live a fulfilled life. Self-care does not have to be expensive or take a lot of time. But it is time

that needs to be invested for your well-being. Check out some easy self-care life hacks that you can do at home. There is no need to spend extra money on your self-care strategies. It only requires time and a conscious effort to make changes.

Fill in your current selfcare practices and work toward balance.

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Self-Care Simple things you can do at home with items you already have. This is an easy and inexpensive way to give yourself a little self-care.

Take the time to rejuvenate with spoons. Yes, with spoons right out of your drawer.

LIFE HACKS

spoons directly under your eyes. Hold the position for 30 – 40 seconds under each eye. The cold temperature is the important step. It helps to reduce swelling and will help your eyes look less puffy. It also gives you a refreshed feeling once complete.

Relax, unwind, and rejuvenate your face!

1. Smooth forehead furrows with a clean, cold, dry tablespoon!

(Using two dinner spoons works well for this). Place the spoons, beveled side down on the center of your forehead. Make small circles for 20-30 seconds.

Smoothly slide the spoons toward your temples and make additional circles on your temples for 20-30 seconds. This can help release tension, and aids in relaxing the muscles.

2. De-puff your eyes!

Get your spoons from step one and chill them. Dip your spoons briefly in ice water or run under cold water and pat them dry with a clean towel. Then place

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3. Make your cheeks rosy!

Move your spoons toward the end of your nose, under your cheekbones. Apply light pressure and begin to make small circles for 30-40 seconds. The circular motion will increase circulation and help bring blood flow to your cheeks giving you a youthful, rosy tone.

4. Tone your jawline!

Next, gently glide the spoons toward the top of your jawline.

In one smooth motion sweep the spoons down toward your chin. Repeat the motion for 3040 seconds. Messaging your jaw line will help release tension, and improve muscle tone to prevent sagging.

5. Plump your lips!

This time use only one spoon and make a large circular motion around your lips for 30-40 secs. This message will increase the blood flow to your lips giving a fuller appearance and will also help smooth away fine lines and wrinkles.

Self-Care

LIFE HACKS

Homemade Coffee Scrub

Homemade Sugar Scrub

Here are some simple things you can do at home with items you may already have at home. The benefits of coffee scrubs are numerous and come primarily from two sources: the exfoliation of scrubbing with coffee grounds and the beneficial anti-inflammatory properties of compounds found in coffee beans.

A homemade sugar scrub is a great alternative to store bought. It is a great exfoliant and moisturizer in one. Massage a small amount into your skin in circular motions for 20 seconds. Rinse with water and gently pat dry. Your skin will feel brand new and incredibly soft and plush. The sugar scrub makes a great gift too.

You can make a large batch and put it in cute little glass jars that can be reused. You can use it on your hands, feet, legs.

8 Benefits of Using A Coffee Scrub For Healthy & Glowing Skin - It reduces inflammation.

- It improves blood circulation.

- It gives youthful, radiant skin.

- It removes dead skin cells.

- It reduces puffiness.

- It improves the texture of your skin.

- It reduces the appearance of cellulite.

- It adds a glow to your skin.

How to Make a Homemade Coffee Scrub: Ingredients 1/2 cup fresh ground coffee (Fresh are best, but dry used grounds will work as well) 1/2 cup brown sugar 1/2 cup melted coconut oil 1 teaspoon vanilla extract Tip: Choose fine grounds, as the coarse kind can be too harsh for sensitive or delicate skin.

Instructions 1. Mix together 1/2 cup fresh ground coffee and 1/2 cup brown sugar.

2. Add 1/2 cup coconut oil with the coffee mixture and 1 tsp. vanilla extract.

How to Make a Homemade Sugar Scrub: Ingredients 1/2 cup coconut oil 1/4 cup sugar (I use organic sugar cane) *Optional: 2 tablespoons citrus zest (such as orange, lemon or grapefruit) OR 10 drops of your favorite essential oils such as lavender, eucalyptus etc. *Optional: 1 teaspoon vitamin E oil 1. In a small glass bowls stir to combine room temperature coconut oil with sugar using a spoon or fork. Add the optional zest, essential oils or vitamin E oil if using.

2. Transfer to an airtight container, seal tightly and store at room temperature for up to two months. If you use the citrus zest it will have a shorter shelf life. *** Disclaimer: remember if you have any active skin lesions, allergies, or inflammation to check with your physician prior to using any of these recipes and/or suggestions.

3. Mix until well combined.

4. Gently rub the mixture over your body.

Leave it on for several minutes. Rinse thoroughly. (Be careful if using the scrub in the shower, as the oil can make the floor a bit slippery.)

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THINGS MY MOTHER SAID...

Remember phrases your mom said to you time and again? Remember some things she said seemed like she was nagging you? Now that we are older, some with our own kids, do you also find yourself repeating those sayings?

This Mother’s Day, we want to give tributes by featuring quotes from moms that stick in your head for life. Please read on for some priceless and sometimes crazy sayings that we remember with annoyance, love, and hilarity all at once.

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WA L K TO E N D LU P U S N O W

®

On 10.16.21 Ohio joins the Nation as we take the Walk to End Lupus Now® virtual, again!

We are excited to announce that registration for the Walk to End Lupus Now® on 10.16.21 is open!

We hope to see some of you early birds getting a jumpstart on fundraising this year. Every dollar raised brings us one step closer to finding the cure for lupus.

We are going virtual again because we care about you and your loved ones. There are many concerns over the uncertainty and danger COVID-19 still presents. It is important for us to lead by example, especially concerning crowd sizes.

We are rallying lupus warriors, friends, family members, and supporters from across the country for the second national virtual Walk to End Lupus Now® event. Even though we are not gathering in a large group yet, let 10.16.2021 be a day of power in the fight to end lupus. Join the power of the movement to end lupus and walk to raise awareness.

It has been a tough year for everyone. Many of us have had extreme challenges and losses. While we struggle to find a new normal, we must come together to support causes that are important to us.

The walk is a time for the entire lupus community to raise money for

critical lupus research and support programs, increase awareness of the disease, and rally public support for those that suffer from its brutal impact. This year, the walk will celebrate a theme of United – Together – Powerful, showcasing the strength of the lupus community to come together, even in these difficult times.

Please use the link below to register for the walk. Because this is a national event, we want to ensure that you are registered for Ohio’s Walk to End Lupus Now® . This keeps the focus on Ohio’s lupus population to ensure they are receiving the support and services they need. Again, use the link below to register for Ohio’s Walk to End Lupus Now® on 10.16.21!

REGISTER NOW

How it Works: 1. Register Start your team or join as an individual virtual walker. Click here to register!

3. Spread the Word Invite friends, family, and coworkers to join your team and fundraise!

2. Fundraise We provide you with all the tools you need to fundraise for lupus research, support, and education services, allwhile earning awesome incentives along the way.

4. Participate Join us on October 16 as we unite as one lupus community for a great virtual event.

5. Walk!

Lace-up your shoes and walk wherever you are, as we take step.

United, together, powerful!

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LUPKYNIS SHOWS FURTHER EFFICACY AS TREATMENT FOR LUPUS NEPHRITIS REGARDLESS OF DISEASE STAGE

BY LUPUS FOUNDATION OF AMERICA | APR 9, 2021

In a new study, Lupkynis™ (voclosporin) for lupus nephritis (LN) treatment proved effective for controlling LN regardless of the disease classification. Delays in LN diagnosis and incomplete responses to treatment can potentially increase kidney damage and other disease complications in people with lupus. Lupkynis treatment can improve kidney response regardless of disease progression at diagnosis.

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Researchers reviewed pooled data from two studies of 532 people with complete renal response by LN biopsy class.

Lupkynis, in combination with mycophenolate mofetil (MMF) and low-dose corticosteroids, led to treatment benefits across biopsy class subgroups compared with treatment with MMF and low-dose corticosteroids alone (placebo).

Lupkynis was approved by the Food and Drug Administration for LN treatment

earlier this year. Consult your physician before making changes to your medication and continue to follow the Lupus Foundation of America for updates on voclosporin.

Learn more about treatments being studied for lupus.

Read the study at auriniapharma.com

COVID-19 VACCINE & LUPUS

BY LUPUS FOUNDATION OF AMERICA UPDATED MARCH 8, 2021

There is still a lot that we don’t know about the vaccines that are being studied and developed to prevent COVID-19. Currently there are three vaccines made by different companies that have been approved in the U.S. We are closely monitoring the FDA’s approval process and latest research so that we can keep you informed. You and your doctor should decide together if the vaccine is right for you and, if so, which one.

How do the COVID-19 vaccines work?

The Pfizer vaccine and the Moderna vaccine use a new technology that relies on messenger RNA (mRNA) from the virus to teach the body how to protect against COVID-19.

The Janssen vaccine uses a harmless virus (NOT the virus that causes COVID-19) to deliver a type of protein from SARS-

CoV-2 (the virus that causes COVID-19) to the immune system that teaches it to recognize and fight COVID-19. The harmless virus used for the vaccine cannot give you COVID-19.

Vaccines are studied in thousands of people before they are given to the general public. It isn’t possible, however, to study each vaccine in every type of person before it is approved.

The FDA, the Centers for Disease Control and Prevention (CDC), and the companies that make the vaccines will continue to study their safety and effectiveness even after they are approved.

a response from the immune system. The Pfizer vaccine is given in two doses three weeks apart and the Moderna vaccine is given in two doses one month apart. For both vaccines it is more common to have side effects from the second dose than the first. You must receive both doses to get the full benefit from the vaccine.

Can I get COVID-19 from the vaccine?

No. It is not possible to get COVID-19 from any of the vaccines that have been approved or are currently being reviewed by the FDA. Does the vaccine have side effects?

Many people in the clinical trials had some short-term side effects from taking the COVID-19 vaccines. The side effects are usually not serious -- one of the most common is a sore or achy arm. Some people develop low-grade fevers or chills and feel tired. This is because the vaccine is working and causing

In most cases these side effects are not dangerous and will go away on their own within a short time. Please call your doctor if these side effects last for more than two days or if you have side effects that are more severe.

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Will my lupus medications affect how the vaccine works?

In general, lupus medications will not affect how the vaccine works. In some cases, particularly for those who take powerful immunosuppressant drugs, your doctor may have special instructions for you so that you can get the greatest possible benefit from the vaccine. Please check with your doctor about how the vaccine fits into your treatment plan.

Were people with lupus or other autoimmune diseases included in the clinical trials for the COVID-19 vaccines?

Are the vaccines safe and effective for people with lupus?

It is unlikely that many people with lupus were included in the clinical trials for the vaccines.

There is no evidence, however, that people with lupus should not receive the vaccine.

According to the CDC, there is no reason to think that taking a vaccine that uses mRNA will result in an inflammatory response (flare) for a person with lupus or other autoimmune disease.

We still don’t have much information on the Janssen viral vector vaccine and people with lupus. But there is no reason to think that it will not be safe for people with lupus to receive it.

There is strong evidence from the clinical trials that taking the vaccine greatly reduces the chance that a person will get COVID-19, which can be a serious or sometimes fatal illness.

The American College of Rheumatology COVID-19 Vaccine Clinical Guidance recommends that people with autoimmune and inflammatory rheumatic disease (which includes lupus) 26

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get the vaccine unless they have an allergy to an ingredient in the vaccine. We will have more information as more research studies are conducted and analyzed over time. We recommend talking with your health care team about the vaccines and your treatment plan, since it can vary from person-to-person.

are currently available.

If you receive a two-dose vaccine, both doses should be made by the same company.

If your first dose of the vaccine is made by Pfizer, your second dose should also be made by Pfizer. If your first dose is made

by Moderna, your second dose should also be made by Moderna.

Of the current COVID-19 vaccine candidates, which one is the best option for people with lupus?

If you receive the Janssen vaccine, you will not need a second dose.

According to the American College of Rheumatology patients with lupus and other autoimmune inflammatory and rheumatic disease should receive whichever vaccine is available.

There is no clinical reason to prefer any of the vaccines that

Most importantly, and this cannot be stressed enough, please be sure to talk with your health care team about the vaccines and your treatment plan, since it can vary from person to person.

PODCAST My Lupus Living Room We welcome you to My Lupus Living Room, a space where we get real about what it’s like to live with lupus. Join our host, chapter President and CEO, Suzanne Tierney, for candid conversations about topics that so often get overlooked. You’ll hear from our Ohio lupus community—including patients, caregivers, and medical experts about the highs, lows, insights, and advice of living with lupus.

Check out our latest podcast, “The COVID-19 Vaccine from Patients’ Perspective.” The Covid-19 Vaccine is here, and we’re all eager to ensure our safety. But as a lupus patient, you might have more questions. Should you get it? Is it safe? Will it cause a flare? What are the side effects? What is the process? We hear you, and we want to answer your questions. On this episode of My Lupus Living Room, Suzanne sits down with lupus patients, Adrienne Fernandez and Kathy Holmes to talk about their experiences getting the COVID-19 vaccine.

This monthly podcast is available at LupusGreaterOhio.org and on major streaming platforms: Apple Podcasts, Spotify, Google Podcasts, Amazon Music, PodBean, and Stitcher. Go to the podcast streaming app or website of your choice, then search for My Lupus Living Room. Make sure you follow us so you don’t miss the latest episodes! Would you like to be on our podcast? Do you have a topic you want to hear about? Connect with us by emailing Info@LupusGreaterOhio.org or call 1(888) NO-LUPUS.

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BLOG Introducing Lupus Night Light Check out our new blog on the LFA, GOC website! This will be a hub for personal stories and articles to help you navigate life with lupus. Learn more about how to cope with the disease and all the effects it can have on various areas of your life. Find tips, patient stories, and get facts about unique topics.

Formal articles are so important for understanding lupus. But they can sometimes miss the perspective of what it’s really like to live with the disease. This blog is a channel to share information and insights from the people who know lupus firsthand: lupus warriors like you.

Make sure to check your email for notifications about new blog posts. You can also go directly to the blog by visiting LupusGreaterOhio.org.

Do you have a question you would like answers to in our blog?

Would you like to share your story with us?

Let us know by contacting the office.

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April was Minority Health Month

The month of April was dedicated to raising awareness about health disparities and about the disproportionate burden of premature death and illness in minority populations. Minority Health Month encourages action through health education, early detection, and control of disease complications.

outcomes can be reformed.

The program was geared toward educating healthcare and community leaders. Both presenters urged the group to stay informed and help create policies to make change. The program is available to watch on the Chapter’s YouTube channel.

Community Health Sciences took time to discuss how lupus disproportionately impacts women and minorities, as well as how public health disparities increase the time to diagnosis and access to care. If you missed the live presentation, you can view the recording on our Chapter website.

On April 1st, the Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) kicked Minority Health Month off with a new program, “Be Fierce: Addressing Health Disparities and Lupus” in collaboration with the Ohio Commission on Minority Health, Ohio Department of Health, and GSK/Us In Lupus. Our speakers included Leslie Vizcarra-Tierney, RN with the Lupus Foundation of America, Greater Ohio Chapter and Yvonka M. Hall, MPA of the Northeast Ohio Black Health Coalition. In addition, Cindy Fiske, RN from GSK/Us In Lupus joined the program to encourage the audience to tune into the tools and resources available to the audience, especially with regards to minority populations.

On April 10th, the Lupus Foundation of America, Greater Ohio Chapter hosted, “Be Fierce: Minority Perspectives,” a FaceBook Live program designed to open the lines of communication and learn from lupus patients with diverse backgrounds. The program was in collaboration with the Ohio Commission on Minority Health. A group of lupus patients shared their lupus journeys and successes with managing lupus.

Panelists included; Aletha Acree, Natalie Lindsay-Smith, Tanya Quinones-Santiago, and Sonia Monray. There were also special guest appearances from State Senator Sandra Williams and State Representative Stephanie Howse.

The program is available to view by visiting the LFA, GOC Facebook page or Youtube channel.

Thank you to everyone that participated in the month-long events.

By asking questions, increasing knowledge, and building cultural competence, lupus constituents can help reform outcomes for minority communities. Taking this important step helps to raise awareness and impact health policies and systems.

Ms. Vizcarra-Tierney focused on lupus and health disparities and Ms.Yvonka Hall presented the importance of cultural competence and knowledge, the impact of policy change, and how these symptoms impact health and policies. When change is affected,

On April 15th, our chapter networks joined together to present “Let’s Talk About It- Health Disparities and Lupus.” Dr. Pamela Payne-Foster, MD, MPH of the University of Alabama College of

A special thank you to the American College of Rheumatology and the Center for Disease Control and Prevention for partnering with the Lupus Foundation of America to help continue the conversation to “Be Fierce and Take Control.” ** Partial funding by the Ohio Commission on Minority Health *** Partial funding by an earmark from the State of Ohio and managed by the Ohio Department of Health. *** Partial Funding by GSK/Us In Lupus

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Suzanne Tierney, CEO/President Suzanne@lupusgreaterohio.org

“I have spent the last 30 years dedicated to the lupus patients in Ohio. The goal is to provide a better quality of life until a cause or cure for lupus is found. My passion is providing programs to empower those affected by lupus so that they will have a better journey with lupus through education and emotional support. Lupus does not have to be a lonely, miserable, and misunderstood illness. My goal is to provide my chapter with the tools and resources to provide such services to all those in the state of Ohio.

Leslie Vizcarra

Vice President of Operations & Patient Navigator Leslie@lupusgreaterohio.org

I’m a registered nurse and have a BSN from Ohio University. My primary role is to help people understand lupus and provide general health education. I strive to build working relationships, solve problems and support patients while they learn how to best manage their symptoms. I started volunteering for the LFA, GOC over 20 years ago. My dedication is driven with a passion to help fight lupus and was inspired by all the people I have met along the way.

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.

Aletha Acree

Community Outreach Coordinator Aletha@lupusgreaterohio.org

I am the devoted mother of two wonderful sons, they are the reason I fight lupus daily. I share my story everyday hoping that it might help or encourage someone else on their journey. I try to leave lupus patients with these thoughts and that is keep your environment positive in all aspects and do what you can while you can!

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Adrienne Rice-Fernandez

Kathy Holmes

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Victoria Hornikel

Lead Project Coordinator Adrienne@lupusgreaterohio.org

Fundraising & Events Coordinator Victoria@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.

Stephanie Holmes

Administrative Assistant Stephanie@lupusgreaterohio.org

I have a very long history with the LFA, GOC. My mom has lupus and she has worked here my entire life. I have seen this organization grow into what it is today, and I am so honored that I get use my skills and learn new ones. As a little girl, I would seal envelopes while my mom was working and now, I am posting to social media and editing videos for the LFA, GOC. I graduated from Capital University with a BA degree in media communications and a minor in public relations.

I joined the organization two years ago, shortly after graduating from Cleveland State University with a degree in Nonprofit Administration. If you call in, I will likely be the one greeting you. I also manage our digital and print communications, constituent database, the walk, and the chapter website.

I am so grateful to have started my career at the LFA, GOC and to be learning from this brilliant team of skilled and passionate lupus advocates.

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.

OUR NEW WEBSITE IS NOW LIVE! THANK YOU FOR READING THE LOCAL CHAPTER MAGAZINE! OUR NEW WEBSITE IS LIVE. TAKE A MOMENT TO VISIT LUPUSGREATEROHIO.ORG FOR NEW FEATURES, IMPROVED CONTENT, AND USER-FRIENDLY CAPABILITIES. WE WELCOME YOUR FEEDBACK..

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 COMMENTS ABOUT THE WEBSITE.

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