Living With Lupus Issue 3

Living

Winter 2020 Edition

With Lupus

Senator Sandra Williams MEMBER OF THE OHIO SENATE FROM THE 21ST DISTRICT

Dear Reader, Honestly, this pandemic reminds me of my journey with lupus. It came totally unexpected, and the cause and the cure are unknown. We do not have a specific medication to treat it and finding the right one is a challenge. It takes a host of doctors to manage it. The medical community is confronted with it and much work needs to be conducted in the area of research to eradicate it. We pray for treatments that will be approved by the FDA that are affordable and accessible to patients. It takes a toll on the whole family and yes it can change your life forever and sometimes even end it.

Recently I spent time reflecting on how this crazy COVID world has impacted our lives at home. Like many of you, my fellow lupians, I have been very restricted in my home. That means that together, with the man of my dreams, we are creating a new normal. There is a lot to be said about partners and couples. I know as a young lady in love, I thought the world would fall apart if I was a minute away from my beloved. My how things can change during a pandemic.

My lupus journey has been a long one. It has been filled with peaks and valleys and a few storms along the way. Together my husband and I have weathered many storms and survived to find pleasure in the rainbows that follow the storms. We know that our relationship is grounded and has very deep roots, so when the storms come, we are able to remain standing. We kind of expect storms, but we couldn’t have anticipated that COVID would be one of them.

We all know what it’s like to be isolated during the COVID pandemic. There is not much we can do while we are hibernating. The restrictions are far greater than I ever felt, even with lupus. The only good thing about being on lockdown is we spend less money, and the house is always clean.

Do not get me wrong, I am blessed that we are well during this isolation or hibernation as you might call it, still I long for my independence. My husband Bill and I recently celebrated 50 years of marriage.

There is no doubt that I love this bold protector, but we are certainly able to get on each other’s nerves.

During our isolation, he is in my space and I am in his. We have been blessed that we’ve navigated the lupus journey together. I pray we can also do the same with COVID. So, I think that this issue of our Living with Lupus magazine, is a good time to share with you some other couples that have been able to navigate the lupus journey too. I am in awe of these special couples and touched base to see how they are doing today. They all gracefully agreed to share their very private worlds with you. This issue will be featuring their stories. I am hopeful that they will make you laugh, perhaps cry, but most of all inspire you.

If you know me well, you are aware that it is other people’s stories that motivate me to keep working to find the cause and cure for lupus. I feel strongly, that by leaning on each other’s strengths we can all learn to live better with this disease we call lupus. These couples have managed to change their lives and remain strong in their relationships. It takes strength and courage to live with lupus and it has been proven by these couples that the best medicine of all is love. I hope you enjoy their stories.

Living with uncertainty is nothing new for us lupians. Without a doubt, I can tell you as the leader of the LFA, GOC that I am no stranger to living with uncertainty. Still, honestly, I will say there is not a nonprofit playbook on how to handle a pandemic. I can only share what I know to be true. I plan on being honest and transparent. This uncertainty is not a pleasant feeling for anyone.

Like most of you I wonder what tomorrow will look like. The reality is that no one knows. What do we do? Just like living with lupus, we will face the challenge before us. We must all do what we can, when we can. Everyone must play a role. Sadly, by the time COVID is done causing havoc and spreading its ugly gnawing teeth across the world, someone you know will be impacted by it.

I feel strongly that each person has a purpose. No matter big or small. We all need to look deep inside of ourselves and ask, “What can we do?” Everyone can do something to help get us on the road to recovery. You matter and will make a difference. Believe it. Because it is true.

Here at the Foundation, we have taken extremely limited resources and learned how to pivot to serve our constituents. We have managed to sustain during a major economic decline. I am astonished at the ability of our staff and our constituents that were able to rally in the efforts to help. Such talent and heart have never ever been exhibited before in my over 30 years of service.

As the year comes to an end, your mailboxes will be filled with year-end giving requests. Please, if you can give, remember to include the LFA, GOC on your list of charities. We will have no revenue stream for the next four months. Sustainability will lean toward grants and most of these funds are being routed to COVID. I believe many of the non-profits will be forced to close this year. Remember that non-profits are on the front line doing their best to help those most in need of their services. Now is the time to do what you can no matter big or small. We must all join together.

This issue, we also have a special treat for you. Our feature story is of an individual that has lupus that is making a huge difference in the war against the disease. Yes, one person can have a big impact. Senator Sandra Williams shares her past, present, and future battles and accomplishments with you. Without her help the LFA, GOC would not be here today. It was her tenacity and passion that led the charge for the first ever Ohio Lupus Needs Assessment that allotted for a line item in the state of Ohio budget and for that we are forever grateful.

The holidays are quickly approaching. They will certainly look different this year. May they be a time for reflection and joyous memories of years past. And let’s look forward to the time when we can all be together again.

We look to science to get us out of this mess. Please follow CDC, NIH, and ODH guidelines and please do what you can to keep Ohio safe.

This issue of Living with Lupus will provide you with a host of information that I know will help you during this challenging time of isolation and uncertainty. I pray that the many stories will keep you connected to us here at the Chapter and offer some sense of closeness. You are not alone. We are constantly working for you and will continue to stay the course as long as we can.

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

CONTENTS

Pg. 1-2 Letter from Suzanne Pg. 5-6 Patient Navigators Pg. 7-8 GSK Has a New Website Pg. 9-18 Patient Stories: Focus on Couples Pg. 19-20 Get Involved & Ways to Give

Pg. 21-22 Prescription Cannabis Pg. 23-24 Mindfulness- Negative Self Talk Pg. 25-26 Walk to End Lupus NowÂŽ Recap Pg. 27-28 In Memoriam Pg. 29-30 Research & News Pg. 31-32 Podcast and Blog Pg. 33-37 Senator Williams Pg. 38 Staff Page

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Senator Sandra Williams Living with Lupus: Two Decades as a Public Servant and Lupus Advocate

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Research and New Senator Sandra Williams Drugs

Learn more from the Institute Clinical and Economic Review (ICER) & about AVISE testing.

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Get Involved GET INVOLVED Join our community and help the LFA, GOC through these times of uncertainty.

Dear Readers, You are at the heart of everything we do. Daily, we consume an overload of newsworthy information and sometimes, that can be hard to relate to.

23 In Memoriam

Those we love don’t go away.

They live forever in our memory.

It is my honor to present to you a reliable source of information connecting you to our community. Living with lupus often leaves you seeking guidance and our magazine is devoted to providing trustworthy information for patients, caregivers, and doctors.

We cultivate stories from community members, research studies, and other relatable news. Living with lupus can be tough, but the LFA, GOC is here to guide you along your journey.

To support you, we focus on publishing quarterly magazines for our readers. We aim to deliver pertinent, up-to-date content to the Greater Ohio region. Our goal is to connect with all of our constituents and ease your lupus journey.

So please, contact the LFA, GOC and let us know how we can better serve you.

for

Sincerely, Dayne Logan Hammond Editor-in-Chief Marketing Manager Lupus Foundation of America, Greater Ohio Chapter

Did you receive a chapter check-in call from your local patient navigator?

If not, we may need your most current contact information. Reach out to the office today!

Local Patient Navigators are Available to You President & CEO, Suzanne Tierney Suzanne@LupusGreaterOhio.org Vice President & Lead Patient Navigator, Leslie Tierney, RN Leslie@LupusGreaterOhio.org Community Outreach Coordinator, Aletha Acree Aletha@LupusGreaterOhio.org Northeast Ohio Brenda Angle & Renee Lyons NEOH@LupusGreaterOhio.org Eastern Ohio Lisa Breiding EasternOH@LupusGreaterOhio.org Western Ohio Justina Casiano & Mike Vollmar WesternOH@LupusGreaterOhio.org West Central Ohio Nikki Roberts Kettering@LupusGreaterOhio.org Central Ohio Tiffany James Columbus@LupusGreaterOhio.org Southwest Ohio Tisa Rice Cincinnati@LupusGreaterOhio.org

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WHAT IS A PATIENT NAVIGATOR? A patient navigator is a trained individual who serves as a local go-to person for support in your lupus journey.

They can help you find resources and navigate the challenges of living with lupus.

Due to the COVID-19 pandemic, our support groups have gone digital.

For the most up-to-date program schedule, please visit: lupus.org/ohio/eventscalendar

US IN LUPUS REVEALS NEW WEBSITE

Get to know the new Us in Lupus website The Lupus Foundation of America, Greater Ohio Chapter recognizes the importance of partnering with organizations that help in the fight against lupus. One of those partners is Us in Lupus. Us in Lupus is a support system for those living with lupus that was created

by GSK (GlaxoSmithKline), the maker of Benlysta (belimumab). Us in Lupus offers skills, tips, connections, and confidence to lupus warriors to face each day with strength. Their mission is to provide education, resources, community, and support for those living with or caring for someone with lupus.

GSK is committed to the well-being, education, and support of people living with lupus. This is why their Us in Lupus program is so important. Us in Lupus recognizes the value in listening to the needs and interests of those living with lupus.

Based on feedback from patients and caregivers, Us in Lupus decided to redesign their website to ensure all those living with lupus had the tools and resources they need at their fingertips. Their new expanded offering includes education and support on topics such as: • Lupus basics and how your life can be impacted • In-depth symptom facts and tracking tools • Ways to live your best life with lupus • Financial support • Tips for caregivers • Resources in Spanish Us in Lupus wants every lupus warrior to feel seen, heard, and understood to live a better life with lupus. Take a moment to check out the new Us in Lupus website for fresh resources.It’s time to live a better life with lupus! UsinLupus.com.

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PATIENT STORIES COUPLES EDITION

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Many people say the words “for better or for worse...in sickness and in health�, but that is much easier said than done. Marriage itself is hard work, but the challenges of living with lupus can really put that vow to the test. These couples show that lupus doesn’t have to stop you from having a happily ever after.

Aaron & Shannelle Anderson

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Nothing great happens without difficult times, so rest, take a break if you need to, but never ever give up!

You get one chance at this thing called life!”

How and when did you meet?

Shannelle: We met in 2015 and we got married in 2016. We bumped into each other at a restaurant. We knew each other from our childhood. We actually grew up on the same street as children, but he was a little older than me.

What do you love most about each other?

Shannelle: What I love most about Aaron is his willingness to help others with no expectation for something in return and his hardworking spirit supersedes anyone I’ve known.

Aaron: “What I love most about Shannelle is her determination and resilience.”

How has lupus affected your relationship?

Shannelle: Lupus has not necessarily affected us in a negative way when it comes to our relationship, but what I will say, that we both agree on, is that it has made us more aware of what we need to do to stay healthy and positive through this journey. It has definitely made us closer.

What kind of challenges have you overcome together in your lupus journey?

Shannelle: I experienced a seizure for the first time on October 11, 2019, which added to what I already had been dealing with for the past six years. That, thus far, was the most challenging experience that we had to overcome. My medications doubled, I was prescribed new medications, I went through physical changes, gained weight, I just wasn’t myself, but I was very determined to birth a new person who would be better this time than who I was before it happened.

Aaron: This past challenge was frightening. We had no idea what just happened to Shannelle.

Out of nowhere, she became unresponsive. Then she was being rushed to the hospital.

That evening when we knew it was going to be okay, I had a conversation with Shannelle to let her know it was time for a change. My determined and resilient woman needed a reminder, but I was frightened.

Together, we made decisions and readjusted. The majority of the work was on Shannelle. No matter what, I am by her side to encourage and support her through our next chapter.

What has life with a chronic illness taught you about marriage?

Shannelle: It has taught us that no matter what, marriage will have its challenges. It’s up to the two of you to come up with a plan and execute that plan to make progress.

What advice would you give to couples learning to live with a chronic illness?

We would advise other couples to be intentional about exercising patience with each other. We both want to add that marriage is hard work, but worth it when you have the right perfect… imperfect person who complements you. Nothing great happens without difficult times, so rest, take a break if you need to, but never ever give up!

You get one chance at this thing called life!

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Chelsea & Chris Ruff-Lovins Lovins 13

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Patience— have patience for your partner.

You two are dealing with different feelings in the same battle.”

How and when did you meet?

Chris and I met at a Skyline Chili in Dayton, Ohio. I went to help open the new restaurant and train new employees as I was an existing manager. I actually trained Chris to be a shift manager. That was October of 2008.

What do you love most about each other?

I love that Chris can always make me laugh and he is always so understanding. We may have arguments, but we always seem to stop and consider each other’s views and opinions.

What Chris loves most about me is that I’m the “other side to his team.” He loves that no matter what struggles we encounter, we fight them together. “She is my co-pilot, my right-hand girl, the yin to my yang!”

How has lupus affected your relationship?

I would love to say lupus has not affected our relationship, but that’s not the case. Chris and I have struggled with not just my disease directly— it has affected us in our intimacy, financially, our ability to grow our family, and where we have decided to raise our daughter.

Financially, it affected us in the fact that Chris and I had long, heated conversations on our ability to pay for things. We had a lot of money going out to doctors’ visits and prescriptions.

It was hard to keep the money coming in when I wasn’t feeling well daily and couldn’t work full time. We also found out I had lupus after we had our daughter, Georgia, and we were told after having her that it wouldn’t be in my best interest to have any more children due to the complications I had with her and the issues I’ve had since having her. So, Chris and I had to come to terms with the fact that Georgia would be our only child. After I had her, my health declined a lot. I wasn’t able to care for her the way I needed to, and Chris and I eventually decided to move back to Indiana, where my immediate family lives, for them to be able to help me with Georgia since Chris worked full time.

What kind of challenges have you overcome together in your lupus journey?

Chris and I have weathered some serious storms together.

From accepting that we would have a smaller family to saving money monthly to buy our first home. We discovered that we complement each other very well. When I’m at my worst, Chris makes sure I know how much I’m appreciated and how far I have come with my disease. We have overcome the challenge of patience with each

other. Finding different ways of communication together.

What has life with a chronic illness taught you about marriage?

Life with a chronic illness has taught us how precious our love and marriage is. We have learned to give and take within our relationship. I have learned I have my bad days where I’m not the nicest person to talk to, but Chris listens to me when I’m upset and snapping at him and makes sure I’m ok. Asks if I’m having a rough day with pain or if I’m not feeling well. As Chris says, it’s about the strength of having to sit there and not being able to do anything to help but not wanting to be anywhere else but there with her.

What advice would you give to couples learning to live with a chronic illness?

Patience— have patience for your partner. You two are dealing with different feelings in the same battle. Be the support system they feel like they may not have. Sometimes it’s just nice to hear ‘Gee, I’m sorry that happened to you. That really sucks. What can I do to help make it a little better?’ Laugh— try not to make everything so serious. No matter how bad you feel, no matter how bad the day is, no matter if you slept all day and spent the day in bed. Smile at each other and laugh. Tell your partner they have some nice bed head! Laughter makes you feel better on your worst days. Forgiveness— forgive one another on those bad days.

It’s just a bump in the road; look forward to the future and smoother roads. Love— love them unconditionally, show the appreciation for each other. We are human. We need to know we make each other feel better.

Hold each other, hug each other, and kiss her on her forehead.

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Tina & Dave Grant God is our guide and with us on this journey.

We are blessed!”

My husband Dave and I have been married for 22 years. In the beginning, our world was easy and fun! Life involved working, hanging out with friends, and spending time with family. We especially enjoyed spending time with Dave’s (our) kids, Kayla, Nick, and Mariah.

We camped, hiked, and hung out in the backyard with all of the neighbors every weekend having campfires.

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A few years later, we had another son, Nathan, and shortly after, Austin, to make our family seven! We remodeled our first home from top to bottom and made it our own. It was perfect to accommodate our growing family. During this time, Dave was diagnosed with serious arthritis called ankylosing spondylitis. Some days he could hardly move and often couldn’t

get out of bed or out of a chair without my help, but that never stopped him from getting up and working in the construction industry every day and being a very active and involved father and husband. I jumped in where he couldn’t. Once a biologic was found to help his condition, and he could move almost normally again and his pain lessened, life got easier. For a while.

About six months after we had our last child, I came home from a movie I was at with my friends and had intense chest pain. After a visit to the ER, it was determined I had a serious condition, myocarditis. This was probably my first serious lupus flare, but we wouldn’t know that until years later. We felt the pull of mortality for the first time as we waited to see how much heart damage this had caused.

Dave jumped in 100% and took over the kids, the cleaning, the bills, etc. Besides one close call with the electricity almost going off (he has never paid a bill before or since—ha ha), we kept life as normal as possible for the kids. This is always our main goal. Never let them see you sweat! After a few months of rest and relaxation, and some heart medication (which I am still on) I was able to go back to work, and life returned to normal. For a while.

Once again, life got real. Dave battled cancer, had surgery to have it removed, then got radiation every morning for a month. He took the earliest 7:30 a.m. appointment every day so that he wouldn’t be late to work.

He taught me, once again, that a serious illness doesn’t have to stop you or keep you down. Life moved on. We camped, worked, vacationed, and spent our days with family and friends. School, work, sports, scouts, and Sunday church filled our weeks.

My journey with lupus began around nine years ago. One day, I suddenly realized that I couldn’t move very well. Pain started quickly setting in from my head to my toes. The pain in the middle of the night was almost too much to bear. A year and a half later, I was diagnosed. I was scared, and that thing called mortality felt too real again. I jumped online and found the

Lupus Foundation and other support information. Reading about other lupus warriors, then meeting them at a local support group, and always having the support of Dave and my family was a big help. We adjusted (no sun, lots of lotion, a few tweaks here and there) and life kept on.

We lived, we loved, we laughed.

I worked 40+ hours every week as a real estate office manager, volunteered at the church teaching PSR, took the kids camping almost every summer weekend, and we were living our best life.

This was until about six years ago when the worst lupus flare hit. I was at a conference and suddenly my words were literally coming out backward.

Who knew THAT was possible? It would be a cool trick if it weren’t so terrifying! I couldn’t complete a sentence. I had developed inflammation in the brain. This was the hardest time for me. I didn’t know if I would ever be able to speak correctly again, and that’s what I do for a living— talk to people for probably six or more hours a day. For about four to six weeks I could think perfectly, but things came out wrong. I cried behind closed doors and Dave was always by my side. But in front of the kids, I always smiled. Despite daily fevers, pain from head to toe, and not being able to remember my words, I dragged myself out of bed and showered and dressed every morning early; it was summer and I didn’t want the kids to worry. Even though I only made it to the family room chair each day, we laughed and smiled and they loved having me home during the day and thought it was a treat!

With many many meals from amazing friends, family, and coworkers, we made it through that summer. I recovered. It took quite a while and about

six weeks off of work to be well enough to go back. This was the scariest time in my life...almost.

If I go on, I am not sure my story would be believable. Dave soon had a heart aneurysm discovered by accident and needed very dangerous openheart surgery. This was the scariest. Thinking of losing my best friend, my husband, the best father, was devastating. He survived, we grew stronger. Two years later, he was stung by a caterpillar. I’m not kidding. But don’t worry, it wasn’t the cute cuddly kind you usually see, and he almost died of an infection.

After a week in intensive care, God saved him. Truly. The prayers of an entire church and family while celebrating my parent’s 50th wedding anniversary, is what brought him out of organ failure. What next you ask? He had one last bout of cancer, two years ago which led to surgery and then recovery.

To see us, you wouldn’t know our story. We are very active, love going camping, riding our jet skis (with 50+ SPF lotion, a hat, and a sun shirt on, of course!), being with family, and we still enjoy fires in the backyard with the neighbors! Don’t get me wrong, we have good days and bad days. We have days we feel great and pain-filled days. We have our share of challenges.

We get through them because we support each other, and try to keep going the best we can at that moment despite any obstacles. We have each other, our family, and most importantly, we know that God is our guide and with us on this journey. We are blessed!

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Virgil & Beverly Humphreys

If you have a loved one with lupus, please pray, be patient, and try to get support. Educate your family and friends about lupus.�

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A Message from President & CEO, Suzanne Tierney I’m simply delighted to share my connection with my fellow lupian, Bev, and her adorable husband, Virgil.

I was not surprised when I read their article. They shared so much yet so little. We have so much to learn from this humble couple. They were very modest about their journey.

Well, I have a lot to say about them. They are wonderful members. They rise even when life brings them down. They have volunteered for many years for the Walk to End Lupus Now®.

They have been dynamic supporters with fundraising initiatives. Bev and Virgil have been co-facilitators of the largest lupus support group in the nation. Their support of others is priceless.

About 10 years ago, I wound up in a nursing home and had broken both legs. This was a lonely and miserable time for me. Not many people came to visit, especially since it was Thanksgiving. I looked down the hall when sitting in my wheelchair and behold there were Bev and Virgil searching for me. I will never forget their kindness and support. This friendship has continued for over a decade.

My favorite saying from them both is “We have lupus.” As with many others in our organization, they are part of the family.

What can we learn from such a wonderful couple?

How and when did you meet?

We met working at Ford Motor Company, where I was a line worker and he was a supervisor.

I did not like him at first. He was a ladies man to the end.

I did not speak to him, but he would speak to me. He used to bring me coffee, but I refused.

I could get my own coffee. He was persistent and always polite.

Long story short, I got a great man. Thank God, 41 years.

What do you love most about each other?

We love and communicate with each other every day. The good, bad, and indifferent. We agree to disagree. My husband is a blessing from God. In sickness and in health. We love each other beyond words. We pray together and we do almost everything together. We are both a little nuts, but we love it.

How has lupus affected your relationship?

My husband is now the caregiver.

He does all that needs to be done and does not complain.

He can cook a mean breakfast, make sure the house is clean, and me too (LOL). He treats me like a queen and he still shows his love every minute and every day. I do not like to see the pain in his face when I am ill. He keeps up with all my medication... Love him.

What kind of challenges have you overcome together in your lupus journey?

Not being able to keep up with housework. Laundry, grocery shopping. Not feeling like going for a ride in the car with my husband. As I get older, I feel more housebound and I am tired a lot. He can cook a great breakfast for lunch and dinner and he goes with me to every doctor’s appointment. We’re able to laugh when I get a little crazy.

What has life with a chronic illness taught you about marriage?

If it is not strong from the beginning, forget it! It is not always about you and lupus, but if it is, try to do something with your significant other on your good days. Cook dinner together, go for a ride, or visit with friends.

What advice would you give to couples learning to live with a chronic illness?

Pray a lot! Listen, be kind, everyone needs their own space.

Try not to be upset, because pain speaks volumes. Lupus is like no other disease. It has its own mind and speaks to only you.

Feel free to add anything else you want people to know.

If you have a loved one with lupus, please pray, be patient, and try to get support. Educate your family and friends about lupus. It can be hard for others to understand why you are in bed or not accepting invitations to be with friends or co-workers.

It is hard to watch your family suffer with you, especially your young grandchildren. It is hard for them to understand. When grandchildren are around, I do my best to get up and fight whatever may be going on.

Thank you, Suzanne [President & CEO of the LFA, GOC], for all of your support and for having the lupus group meeting. They do lift my spirit. Thank you for your prayer and kindness. We, the Humphreys, see you as our family. Love you and be blessed.

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GET INVOLVED JOIN THE COMMUNITY Email Sign-Up

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: lupus.org/ohio/get-involved

Text Message Notifications

Text “NOLUPUS” to 833-4490800, complete your contact information, and be sure to optin to receive important lupus updates directly to your mobile device.

Get Social

Join us on our social media plat-

forms to stay connected: lupus.org/ohio/get-social

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

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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.

Then, submit your application and wait to be contacted by an LFA, GOC staff member.

Join the 2021 Digital Lupus Advocacy Summit

From March 2-4, 2021, join thousands of your fellow lupus advocates to make an enormous difference in the fi ght against lupus.

During the first two days of the summit, you’ll hear from the leading lupus researchers about the latest breakthroughs, as well as interact with experts in the field about lupus advocacy, care, and support. On the final day, you’ll participate in virtual meetings with your members of Congress to tell the lupus story and urge them to support policies to improve the lives of

everyone affected by lupus.

Registration opens on December 16! Become an advocate: lupus. org/ohio/lupusadvocate

Become a Member

One-year: $25 Lifetime: $200 lupus.org/ohio/ become-a-member Your membership helps us continue to: •

Respond to thousands of calls a year on our information line.

•

Provide lupus support groups, educational programs, and a physician directory.

•

Support research, promote lupus awareness, and advocate for patients and funding.

WAYS TO GIVE Traditional

Checks Please make checks payable to the Lupus Foundation of America, Greater Ohio Chapter, and mail them directly to 12930 Chippewa Road, Cleveland, Ohio 44141.

Credit Card + PayPal Fill out the online donation form or call the office.

Social Media

Facebook Fundraiser Facebook birthday fundraisers are an easy way to use your platform for a good cause!

Instagram Stories Did you know that you can put an LFA, GOC donation sticker on your Instagram story? Adding this button to your story creates a mini-fundraiser in which your followers can donate quickly.

Through Your Job

Double The Donation This is a tool on our donation page that tells you if your company matches your gift.

Combined Federal Campaign CFC #51890 Creating Healthier Communities CHC #9963

United Way Campaigns Check your local campaign for more information on donor choice programs.

Investing

Stock or Other Securities

In Honor of‌

Memorial Donation You may make a gift to the LFA, GOC in memory or honor of a loved one. Visit our website to download the form for this option.

Tribute Donation You can include the LFA, GOC in your will to support the mission beyond your lifetime. Visit our website for more information on leaving a bequest to the LFA, GOC.

Other

Amazon Smile Donatestuff.com Schedule a donation pickup of your gently used goods and pick the LFA, GOC as your charity.

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

Life Income Plans Pooled income fund Charitable remainder trust LIVING WITH LUPUS MAGAZINE

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Dr. Bridget Williams Her practice is leading the way in cannabinoid medicine and education. Dr. Williams spends time educating professionals and patients regarding the benefits of cannabis and CBD. She is helping the public understand fact versus fiction regarding medical cannabis.

Prescription Cannabis: What is it? Can it help me? ***Disclaimer: The Lupus Foundation of America, Greater Ohio Chapter does not give medical advice to patients regarding the treatment of their lupus. Your physician is the

benefits of medicinal cannabis? It starts with research and education.

We started by talking to a physician and a lupus patient.

best source of information regarding medical management of your lupus. This article is a human-interest piece to help educate and assist patients in making informed decisions. Please discuss any treatment options with your health care provider.

Cannabis, which marijuana is a type of, has been studied for thousands of years for its healing properties.

Yet, it is still unclear to the general public if there are actual medicinal benefits. People tend to have a preconceived notion regarding marijuana that does not convey a positive image as a treatment option for illness. However, for many diseases, the medical community is beginning to realize that this belief is not substantiated.

How can we look past barriers and remove preconceived notions regarding potential outcomes and 21

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In the state of Ohio, the use of medical cannabis is legal. Currently, there are 22 qualifying medical conditions for which medical marijuana is a treatment option. These conditions are: AIDS, amyotrophic lateral sclerosis, Alzheimer’s, cancer, cachexia, chronic traumatic encephalopathy, Crohn’s, epilepsy, fibromyalgia, glaucoma, hepatitis C, inflammatory bowel disease, multiple sclerosis, chronic and severe or intractable pain, Parkinson’s, HIV, post-traumatic stress disorder, sickle cell anemia, spinal cord disease, traumatic brain injury, and ulcerative colitis.

We have spent time with Dr. Bridget Williams, owner of Green Harvest Health, a medical cannabis and life coaching clinic.

Treating a patient with medical cannabis isn’t as easy as it sounds.

Williams explained that treatment with medical cannabis depends on the patient’s condition and tolerance. There are over a hundred compounds in the cannabis plant called cannabinoids. These cannabinoids include tetrahydrocannabinol (THC), cannabidiol (CBD) and cannabigerol (CBDG). She goes on to explain the differences.

Tetrahydrocannabinol (THC) is the psychoactive part of the plant. It can help as a pain reliever, increase appetite, relieve spasms, work as a muscle relaxant, and reduce nausea. THC does give an effect of euphoria. This euphoric effect can be compared to the effects of a glass of wine.

Cannabidiol (CBD) has a nonpsychoactive component. It has been used to help reduce nausea, provide pain relief, increase the appetite, reduce spasms, as a muscle relaxant, aid sleep, reduce anxiety, reduce immune system function, and is a neuroprotective.

Cannabigerol (CBDG) has a nonintoxicating effect. It is known to be anti-fungal, anti-bacterial, and anti-inflammatory. It also lowers blood pressure and aids in sleep.

The routes of administration for medical cannabis are inhalation

through vaping, oral consumption through edibles, or sublingual oil droplets (administered under the tongue).

We spoke with Justina Casiano, a lupus patient and a chapter patient navigator for Northwest Ohio. Justina started having lupus symptoms as a senior in high school. She was an active student and loved to play softball.

But Justina describes random debilitating symptoms that came out of nowhere. She went from being an active high school senior, playing softball, and working as a waitress to not being able to walk on her own. The radiating pain was so great that she felt paralyzed at times. She suffered from extreme fatigue, extreme joint pain, nausea, rashes, and unexplained bruising.

It was so bad that her softball coach was worried that someone was physically harming her. She endured seven months of repeated doctors’ appointments, trips to the emergency room, and rounds of misdiagnoses. She was turned away from a medical professional because they did not know how to help her. She began to think that medical professionals did not believe her.

Like many patients, Justina was frustrated and confused but determined to figure out what was wrong. It wasn’t until she was outside her local community and had to be taken to a local emergency room because she was short of breath that they noticed a malar rash on her face. She was referred to the University of Toledo and received a diagnosis of Systemic Lupus Erythematosus (SLE) in the summer of 2015. This rheumatologist also diagnosed her with arthritis and Raynaud’s, a condition where blood vessels constrict in response to cold or stress. The doctor prescribed her the typical medications to treat her symptoms; Plaquenil, prednisone, and naproxen. Despite receiving

a proper diagnosis and starting a proper medication regimen, she wasn’t responding. Her kidney function had worsened and over time she developed multiple stones in each of her kidneys. On top of the SLE diagnosis, she also developed lupus nephritis. In the spring of 2017, her grandmother learned of the Lupus Clinic at the University of Michigan. She decided to make an appointment.

They found that her lupus nephritis developed into stage two. At that time, the young lupus patient was on thirteen different pills and a biologic auto-injection medication.

Her kidney specialist was talking to her about possibly needing surgery. The medications she was taking did not agree with her either. Her body rejected some of them and she developed adverse reactions. Justina is unable to take Tylenol because of her kidney disease and could not tolerate narcotic analgesics as prescribed.

It was at this point that Justina says she felt “robbed from her entire life.”

In 2018, her rheumatologist suggested she try medical cannabis. Her physician showed her how scarred her kidneys were and they began discussing the possibility of a kidney transplant.

At this time Justina realized that she needed to continue to find other ways to help and she was referred to another physician that helped her receive the new treatment with medical cannabis.

She made lifestyle modifications, changed her diet and with the help of her physician they developed a new plan of attack. She received a medical cannabis card. Within six months and by the time of her next doctor’s appointment, the kidney stones in each kidney dissolved.

Her kidney function improved to normal and she moved to stage one kidney disease. Her lab also improved overall.

doctor has seen the benefits. It helps with managing pain, nausea, insomnia, and increases my appetite. It improved my kidney function, and it is getting me closer to possible remission.”

She goes on to say, “Medical cannabis is not a fit for all lupus patients, but it helped me reduce my doctor’s visits and medications.

Currently, I am only on three lupus medications; one pill, a weekly biologic auto-injection, and medical cannabis.”

Justina’s fighting attitude and strong perseverance got her where she is today. Five years ago, Justina was in a whirlwind of medical problems. But now, she can talk about her experience and wants to help others find their way back to better health.

It is brave lupus patients like Justina that step forward to share their journey with lupus that help us all learn and understand the disease better. We look to medical professionals like Dr. Williams to validate and educate the community to have a better understanding of the disease and the treatment options available.

Medical cannabis may not be a fit for everyone. Both Justina and Dr. Williams want to overcome the stigma that medical cannabis presents and educate lupus patients that there may be other options besides standard treatment therapies. For more information and the latest research, please visit: www.LupusGreaterOhio.org.

Justina Casiano Justina shares, “Medical cannabis has truly helped my lupus. My LIVING WITH LUPUS MAGAZINE

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Mindfulness: Correcting Negative Self-Talk Take a conscious moment right now to check in with yourself.

How are you doing? What does your inner voice say to you?

There are so many thoughts and emotions that we experience in a matter of seconds. We think of appointments we have, medications to take, bills to pay. At this moment, push out every thought, worry, task, and set it aside. Just have a moment with your inner thoughts.

Take a minute and check in with yourself. (Pause for your reflection time.)

Now, be honest. Are you able to check in with yourself like you were checking in with a close friend? Did you greet yourself with kindness and compassion?

If you did, you are ahead of the game. You can do something many people need to work at.

Good for you!

Our inner voice is so important.

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The words you speak help shape you as a person. But the most important words are the words you say to yourself. Many times, we allow our inner voice to become a negative voice from years of programming and training our brain. The voice becomes a natural impulse, one that is not kind or uplifting. We tend to be harder on ourselves and not allow any room for forgiveness. When you forget something, does your inner voice reassure you that it will be ok? Or do you insult yourself with negative self-talk?

Negative self-talk is when your inner thoughts convey a message that you are not good enough —that you are not equipped.

These thoughts are not forgiving or supportive. Negative selftalk creates the illusion that you are always forgetful, overweight, constantly late, and not beautiful. Or we reflect

on a time we made a mistake, and your inner voice browbeats you on how you handled the situation. Our negative self-talk shouts, “I shouldn’t have done that,” or, “I wish I would have said that instead.” Focusing on these negative thoughts can lead to decreased motivation as well as greater feelings of helplessness. This type of critical inner dialogue has been linked to depression. Those who find themselves frequently engaging in negative self-talk tend to be more stressed.

This negative self-talk can be a hard habit to break, but it’s not insurmountable! If you can train yourself to recognize when you are practicing negative self-talk, then you can fix the problem.

Think of your inner thoughts like a computer program. Our minds are powerful and are connected to the world like the internet.

We are constantly downloading and uploading information and content. Every memory is like a file you have created. Every file is saved into your drive. Over time, we build a collection of files in different programs. We can access these programs and files whenever we need them.

Start by recognizing a desire for change. Next, it’s time to download the latest version of antivirus software into your consciousness. Then you can begin to create positive files within your mind. By downloading positive feedback and reassurance directly to the source. When you catch yourself creating a negative file/thought, think to yourself;

cancel, cancel, delete, delete, this file has no room to be saved. Then take that file and throw it in the trash or recycle bin. Your virus scan recognizes the negative self-talk as a virus and your consciousness will not allow you to save that file.

Replace the negative thought with positive reassurance. As an example, “I will disappoint everyone if I don’t go out with them.”

Remember, cancel, cancel, delete, delete, this file has no room to be saved. Replace it with, “I am smart enough to know that it is not in my best interest to go out tonight. My friends will understand.”

What happens over time is you create a library of positive selftalk and the language becomes code that your computer remembers forever. You will begin to treat yourself with kindness and compassion and the viruses will be deleted before they become a problem.

You will treat yourself the way you treat your best friend.

Remember to be kind to yourself — you deserve it!

Virtual Walk to End Lupus Now® Virtual Walk to End Lupus Now®

Our first first ever to to EndEnd Lupus Now® was Our everVirtual VirtualWalk Walk Lupus Now® incredible! We were able to raise over $74,000 and was incredible!

We were gathered 425 registrants this able year. to raise over $74,000 and gathered 425 registrants this We are so grateful for everyone’s support. Your year. efforts make a huge impact!

We are so grateful for everyone's support.

Your efforts make a huge impact!

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Virtual VirtualWalk Walkto toEnd EndLupus LupusNow® Now® Virtual Walk to End Lupus Now®

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Wanda Hassertt Elijah Carl Hawkins Ethna Heaney Stace Helmer Kittie Hill Dolly Hillier Elizabeth Hohlakis Karen Horvath Carla Sue Hosmer Karon Humphries Yvonna Inez Stoudt Esther Jackson Carter Barbara Jeske Ralph Jicha Lorinda Johnson Madeline Jones Susan Jones Stephanie Jordan Douglas Keller Donna Rose Keller Barrie Brenda Kennedy Leandra Kent Carla R Kenworthy Merry Ann Kilker Patricia Kilmer Jill Kirk Ronald Korte Donna Kubinski Betty Kuhn Mary Labmeier Carlos Laboy, Jr Lloyd Lachtrupp Betty Lambert Marie Lance Ruby Lanham Arthur Lara, Jr. Brandi Larson Kenneth Lavan David Leasure Carol “Lynn� Legan Richard Leimann Henry Lo Conti Kathy Lopez Brenda Luciani

Forever in Our Hearts Sandra Lyles Grace Aldeen Mann Rosemary Mardis Debra Ann Mathews Tyler McHenry Elizabeth Ann McKenna Nakeyia McMichael Kassie McMullin-Biglow Rochelle McNeal Tonya Meade Ira Melnicoff Alexis M Merriner Barbara Mesarich Rae Michele Arnie Milefchik Crystal Mirza Charlene Molitoris Gloria Mondok Paul Mooney Loretta Moore Grace Morgan Dorothy Mullick Patricia Murphy William Musselman Thelma Pearl Nelson Tina Newman Carroll Lee Nibert Asia Nunez Theresa Obran Cheryl Ostrowski Jill Paolucci Jack Pekar Brad Petticrew Denise Petticrew Alexandra Pfeiffer Brenda Phillips Bessie Pierce Albino Pinesi Norma Pinkie Sherry Pnitchett Janet Powell-Taylor Grace Powers

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Aurea Torres Nancy Trabue Bobby Tuttle Janet Twarogowski Rita Ulmschneider Durant Valenti Rosalia Valenti Sherry L Valenti Theresa Vandver Jennie Virant Virginia Vogt Diane Wade Stephanie Walker Debra Walton Allison Warner Gail Waters Kimberly Waugh Jeff Weaver Nancy Weeks Dorothy Wellman John Welsh Susan Werntz Melissa A White Judy Wielinski Mary V Wilcox Kathryn Williams Barbara Williams Gilman Dianna Williamson Loyna Willis Therien Lucille Wingard Cathy A Wood Deane Woodard Susan Woodard Sylvia Woodard June Wright Janet Young Johanna Zambory Nick Zavarella Ben Zide Sherie Zucker Jackie Zupan

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RESEARCH ICER to Assess Two Treatments for Lupus Nephritis Who is ICER? ICER is a non-profit research organization that evaluates the clinical and economic value of prescription drugs, medical tests and other medical interventions. ICER uses a value assessment framework to determine value. The methods of this framework have been debated because of the use of the quality adjusted life year (QALY), a commonly used measure in health economics.

On August 10, the Institute for Clinical and Economic Review (ICER) announced it plans to assess two treatments for lupus nephritis, voclosporin (Aurinia Pharmaceuticals, Inc.) and belimumab (Benlysta, GlaxoSmithKline). This includes reviewing evidence on how well each drug works, how they compare to other existing treatment options, and the value they would bring to people with lupus nephritis.

The U.S. Food and Drug Administration (FDA) is currently reviewing voclosporin as a new treatment for lupus nephritis, while belimumab is seeking approval from the FDA to expand its use from lupus to lupus nephritis. Both treatments are expecting FDA decisions in early 2021.

LFA’s plans to engage

Why is this review important?

ICER reports can be influential when it comes to insurance coverage and reimbursement of treatments, access to treatments, and can influence the price and availability of treatments. ICER reports are increasingly reviewed by insurers and other payers.

These reports can also impact drug development and the incentives for companies around whether or not to develop new treatments.

As ICER conducts reviews, the organization relies on publicly available clinical and health economic data, including data about the disease and the drugs under review that are available from scientific literature, clinical trials and expert analysis. ICER also examines the burden of a disease, quality of life and the unmet needs in a disease, so it is critical that ICER is made aware of the challenges of living with and managing lupus over a lifetime.

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The Lupus Foundation of America is committed to engaging with ICER throughout the entire process to ensure the voice and experiences of people living with lupus is understood and included in their review.

Additionally, the LFA will work to ensure that assessments of the value of new treatments do not simply rely on the clinical and economic value of a drug, but also the value of the drug to people with lupus when it comes to improving and making a difference in their lives.

Part of the LFA’s role will be to connect people with lupus, clinicians, researchers, and policy and economic experts to illuminate key issues around lupus nephritis, as well as bring forward critical data and research to help inform ICER’s review.

AVISE Lupus Test Allows for Earlier Disease Diagnosis – and Significant Healthcare Savings Because the AVISE Lupus Test can diagnose lupus earlier and in less severe cases than standard diagnostic laboratory tests (SDLTs), a new study finds it also results in significant savings in healthcare costs. Over a four-year period, AVISE Lupus yielded an estimated total direct cost savings of $1,991,152 – a savings of nearly $2,000 per person with suspected lupus.

By supporting earlier lupus diagnosis, the test likely helps reduce healthcare costs by reducing hospitalizations as well as outpatient procedures.

Researchers used a mathematical model to estimate pre- and post-diagnosis healthcare costs in people with suspected lupus and compared those tested with AVISE Lupus to those tested only with SDLTs. Given the AVISE

Lupus test’s improved performance, 71% of suspected lupus cases are diagnosed within one year, compared to 53% of suspected cases tested with SDLTs. By year two, 87% of those with suspected lupus in the AVISE Lupus testing group are diagnosed with the disease, compared to 75% in the SDLT group.

Over a four-year timeframe, pre- and postdiagnosis direct medical costs to a payer for 1,000 patients with suspected lupus who were tested with AVISE Lupus totaled roughly $59 million dollars, versus a total cost of about $61 million dollars for those assessed by SDLTs. Interestingly, while postdiagnosis costs were actually higher in the AVISE Lupus group, the drastically decreased pre- diagnosis costs resulted

in a significant net savings.

The AVISE Lupus healthcare savings in year-one alone totaled $655,403.00, or $655 per eligible patient. Inpatient hospital admissions were the largest driver of pre- diagnosis healthcare costs.

The LFA funded the early research on the biomarkers used in the AVISE Lupus test.

Also, the Foundation’s advocacy efforts led to the creation of a new government medical research fund used to develop the test. These latest findings demonstrate both the positive economic and treatment impact of earlier and more accurate diagnosis provided by the AVISE Lupus test.

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My Lupus Living Room Podcast Check out our new podcast on your favorite streaming platform The LFA, GOC is excited to announce our new podcast! 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.

Every lupus journey is different, and so it’s time to dig into the stories of people who know lupus and its everyday impact. There are so many aspects of lupus that don’t get talked about enough, either because they’re taboo, or because they’re not considered major issues. My Lupus Living Room opens the door for difficult conversations, unexpected challenges, and uplifting stories that are all part of the lupus journey.

This monthly podcast is available on our website and on major streaming platforms: Apple Podcasts, Spotify, Google Podcasts, and more. 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. Listen: lupus.org/ohio/podcast

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Introducing the LFA, GOC Blog Get personal stories and tips for living your best life with lupus 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 lupus.org/ohio/blog.

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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Living with Lupus:

Two Decades as a Public Servant and Lupus Advocate SENATOR

SANDRA WILLIAMS When faced with the current social and political landscape, many people find themselves stuck, feeling powerless in their own lives, let alone able to heal the country. However, amidst a divided nation, a pandemic, and the ongoing challenges of institutional discrimination, State Senator Sandra Williams is stepping up to address the issues. Senator Williams represents Ohio’s 21st Senate District, which consists of central Cuyahoga County. She is also one of the foremost lupus advocates in the Ohio State government, and as a lupus patient herself, her devotion to the cause is personal.

During her more than 20 years (and counting) in public service, she has not only advocated for the lupus community, but has also worked to alleviate inequity, healthcare disparities, and more. Her experience—both personal and professional—has kickstarted her ambition for a new role.

“I’m considering running for Mayor of the City of Cleveland next year,” said Williams. “It’s been interesting so far. There has never been an African American woman elected as Mayor of the City of Cleveland.

There has been only one female elected as mayor.”

Williams describes herself as,“dedicated, determined, and committed with a ‘stick to it’ personality.” Her extensive experience is reflected in her ability to readily draw from personal stories, successes and failures as a legislator, and the struggles of her constituents.

She is connected to the community as a native Clevelander herself, as well as through her work. Her career has spanned various fields including corrections officer, probation and parole officer, mediator for the State of Ohio, legislative aide, and a State Representative.

Williams also served as a member of the United States Army Reserve and was honorably discharged in 1995. In the current General Assembly, she serves as a ranking member on multiple committees, as well as Vice-Chair of the Finance Subcommittee on Higher Education.

Williams holds a bachelor’s degree and an MBA from Cleveland State University. She also has a master’s degree and an honorary doctorate from Tiffin University. In addition, she served as the Vice Chairwoman of the Cuyahoga County Democratic Party and is a professor at Cleveland State University.

Although she is a Democrat to her core, she also believes in bipartisan leadership, even if it disquiets her fellow legislators. Williams began her role in politics as a legislative aide and was eventually elected as a State Representative. She said that her early years in politics were spent just saying “no” to anything that the opposing party

supported because, at that time, that was what she was told to do.

However, one day, while she was driving to the Ohio Statehouse, Williams asked herself why she was opposing everything. She realized that always saying no was not helping the situation, especially when the opposing party already had enough votes to overturn any veto. In a moment of clarity, Williams decided, “I’m going to Columbus, and I’m going to see if I can get something done. We might not agree on everything, but for those things we can agree on, I’m going to work with you [the opposing party].”

Some people challenged Williams on her shift in ideology.

Despite the critics, her life has remained a testament to doing the work and getting the job done. After years in office, she has become adept at cutting through red tape and navigating the political sphere to accomplish her objectives.

Her constituents always remain her driving force; they are what make her get up each day to work toward a balanced and bipartisan legislature so that she can bring the issues that her constituents care about to the forefront of the Ohio Senate.

This mindset is what has led her to accomplish so much and drive home the democratic agenda, even during a time when the Senate Majority belongs to the Republican Party.

Among many other issues, she has done a substantial amount of work advocating for lupus patients’ rights and ensuring that lupus remains at the forefront of Ohio’s healthcare agenda.

Williams has been a driving force behind funding in the state legislature for lupus. She was instrumental in securing a line item in the Ohio State budget for the specific purpose 35

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of lupus education, awareness, and programming.

Her story is like many lupus patients, in that she woke up one morning and could not walk. At the time, she lived in a small apartment in Toledo and the walk from her bed to the bathroom took over a halfhour. This happened day after day until she finally went to the doctor. Unfortunately, the first

few medications she was given didn’t work. She went back to the doctor and explained that she needed to feel better to do her job as a parole officer properly.

She was promptly told that her HMO wouldn’t cover the tests that they wanted to do because the insurance required them to try other things first. Knowing she did not have the money to cover the test, she told them to run it anyway—she would pay

helped her as she has aged.

“It’s use it or lose it,” according to Williams. Additionally, she makes sure to get adequate rest, take her Plaquenil, and stay on top of her health by visiting the doctor.

Williams recommends newly diagnosed patients take the time to listen to their physician, but also educate themselves and do their homework to make the best decision for their own body.

Impassioned by her experience as a patient and legislator, Williams educates her peers and those in the community about lupus. Whether discussing lupus with her colleagues, at events with the LFA, GOC, or talking to her constituents about the disease, she is committed to bringing awareness to an illness in which so many suffer and there are so few treatment options. Additionally, she places an emphasis on listening to lupus patients. She believes that to teach others, she must also listen.

“You can’t understand where a person is coming from unless you know what they are dealing with,” said Williams. She applies this mindset to lupus advocacy, as well as issues like minority disparities.

for it out of pocket because she knew something was not right.

Based on the results, the doctor told her she had arthritis, but it took her nine months to get in to visit a rheumatologist (a common roadblock for lupus patients). Once she got there, Williams was finally given the diagnosis of lupus.

Williams said that it has taken a lot of trial, error, and learning to

get her lupus to a manageable point. But she knows, especially while working tirelessly as an Ohio State Senator, that she must be vigilant. She said that based on her experience and from working with her team of doctors, that the best thing she can do is keep her joints loose.

She exercises as much as she can and ensures that she is always moving her joints so they don’t get tight. She says this has also

One point of focus for Williams is healthcare disparities, which are prevalent in many diseases including lupus and COVID-19.

She said that first and foremost, many African Americans do not go to the doctor, either due to economic reasons or because of a lack of trust—there is a long-standing history of racial discrimination in medicine.

Williams had encountered this firsthand at a doctor’s appointment. She admits that she had worked outside before LIVING WITH LUPUS MAGAZINE

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initiatives that revised criminal sentencing and re-entry laws and removed barriers to employment, giving a second chance to ex-offenders. She also works with rural legislators and reflects on the lessons she learned from her parents who grew up in rural Aliceville, Alabama. She has started food programs that educate people to eat well and helped start a bachelor’s degree program at Central State University to teach people about farming and the agricultural industry. she went and wasn’t dressed for work, but she said it was obvious that the doctor was judging her harshly and suggested he was unable to help her. When the doctor asked what she did for a living, she explained that she was an Ohio Senator representing the very hospital system he worked for.

Williams said the doctor quickly changed his tune, but, true to form, she let the physician know that she would not allow treatment from him. She said that this is not an uncommon experience for African Americans and it certainly influences whether the community reaches out for treatment.

There is also the issue of being turned away. Public hospitals and doctor’s offices are not supposed to turn anyone away if they cannot afford a co-pay and no hospital can refuse emergency care. However, Williams has had to call many times on behalf of constituents to remind hospitals and doctors that they cannot deny care.

“This is a systemic issue,” said Williams. “More African Americans are also getting COVID-19 because there are a lot of minorities on the front lines.

They are driving the RTA buses, 37

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working in restaurants, grocery stores, and cleaning the streets.

So, they are coming into contact with people every day. And they are right there, in the element, unlike other people who may be in an office building,” she said She also points out that minority disparities are not limited to diseases. They can be found in the courts and criminal justice system where she has worked to drive change. Williams can recount multiple instances where constituents with mental health issues or drug and alcohol addiction were sentenced when the “real issues” were not dealt with. She is passionate about diagnosing and treating the issues at heart to keep people out of the system and help reduce recidivism.

Senator Williams’ interests are not singular, however. Her career can perhaps best be described as far-reaching and multidimensional. She has made sweeping changes to improve access to economic development, expand job training opportunities, help create an Ohio scholarship fund, and she was a joint sponsor on legislation that assisted the growth of diverse startup and early stage technology companies. She has promoted

Williams addresses a wide range of issues in her work, but no matter the subject, she stresses the importance of getting to know the person behind the issue. She said that as legislators, politicians often forget the people for whom they are advocating. Williams makes it a point to remember that every person is a human being and legislators do not need to mistreat each other to get a point across.

As Cleveland’s 2021 mayoral race picks up, Williams knows that a potential run for mayor is no easy feat. Already, she said that one colleague told her she would not be able to raise enough money. But she is not one to shy away from a challenge. This is true not only in her career but also as exemplified in her battle with lupus.

Reflecting on her time training with the Army Reserves she said, “A lot of times, people give up when faced with adversity. But in basic training, you don’t have that option. And I remember that and bring it to every table that I sit at, whether I’m going to college, interviewing for a job, or running for office. There is nothing I don’t believe I can do.”

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 Tierney

Vice President of Operations and 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.

Amber Bills

PR & Marketing Coordinator Amber@lupusgreaterohio.org

I am so glad that I can apply my passion and skills toward such a great cause. I am part of the team driving marketing strategy so that we can build the LFA, GOC community, increase lupus awareness, and raise funds. I’m an alumna of Baldwin Wallace University, where I earned a BA in public relations and minored in English writing and marketing.

Kathy Holmes

Finance Manager Kathy@lupusgreaterohio.org

I was diagnosed with lupus in 1989 and joined the Lupus Foundation of America, Greater Cleveland Chapter the same year. I have been able to grow with the organization, as it became the LFA, GOC. Knowing how important it was to have somewhere to turn when I was first diagnosed is what motivates me to do all I can to help our chapter continue in our mission. Being in remission for the past 20 years has enabled me to take an active part in the growth of our chapter.

Victoria Hornikel

Adrienne Rice-Fernandez

Executive Assistant to the CEO & Lead Project Coordinator Adrienne@lupusgreaterohio.org

Dayne Logan Hammond Marketing Manager Dayne@lupusgreaterohio.org

My background is in Digital Content Creation, specialized in graphic design, management of social media campaigns, and strategic analytics for potential development. I find great honor in working for a foundation responsiI’m also a patient, so finding a ble for marketing pertinent cause and a cure is especially information, education, and important to me. I love speak- updates for the Greater Ohio ing with patients and caregiv- region. My goal is to increase awareness, accurately repreers when they call the office because I can empathize and sent the Lupus Foundation, offer a sympathetic ear. and extend our reach in the quickly changing digital sector.

I help with anything from grant writing, coordinating advocacy efforts, managing projects, writing/editing and whatever else our office needs.

Aletha Acree

Fundraising & Development Coordinator Victoria@lupusgreaterohio.org

Community Outreach Coordinator Aletha@lupusgreaterohio.org

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.

I am the devoted mother of two wonderful sons, they are the reason I fight lupus daily.

I share my story every day hoping that it might help or encourage someone else on their journey. I try to leave lupus patients with these thoughts and that is keep your environment positive in all aspects and do what you can while you can!

Stephanie Holmes

Social Media Intern 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 to 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.

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The funding for this magazine is from an earmark from the State of Ohio and managed by the Ohio Department of Health.

Lupus Foundation of America, Greater Ohio Chapter

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12930 Chippewa Road, Brecksville, OH 44141 (440) 717 - 0183 1 (888) NO - LUPUS

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