Living With Lupus - Issue 16

SPRING CLEANING TIPS

Lupus warrior and LFA, GOC staff, Adrienne Fernandez, shares her favorite spring cleaning tips for people living with chronic illness. / p. 06

Get

SUZANNE’S LETTER

Read a personal letter written by Suzanne Tierney, lupus patient, CEO, and President of the Lupus Foundation of America, Greater Ohio Chapter. / p. 01

Suzanne

“Although no one can go back and make a brand new start, anyone can start from now and make a brand new ending.” That quote has been attributed to either James Sherman, or Carl Bard, depending on who you ask. Regardless of the original author, it has been on my mind a lot lately. There is a lot that I’m sure we all wish we could change, such as things we have said and decisions we have made. And, as lupians, we all wish we could change the fact that we have been forced to live with lupus. But with experience, comes wisdom. We should focus not on our past but on making a better today and a better future.

As we transition from the cold, dreary, gray that is winter in Ohio, visible change is abundant. Longer days and warmer temperatures give us more time to get things done. Let’s focus on using our days wisely. Most people overestimate what they can accomplish in a day, yet underestimate what can be done in a year. Consistent, incremental growth compounds over time. The progress we have made as a chapter is proof. More people in Ohio know about lupus than ever before. There are a lot of people to thank for that, but none are more important than you. Our chapter continues to thrive because of the community of lupians who support it.

Now is the time to start transitioning the awareness we have created into support. We have been blessed to have immense support from our great state as well as pharmaceutical companies. But those funds are often for very specific projects that are planned well in advance. Recently you all have been expressing needs and challenges that you are facing and the list is immense. Implementing new programs quickly to tackle those needs requires unrestricted funds that we desperately need more of. That is why community fundraising events and our walks are so important. This chapter was built on community, and we need you to tap into yours in order to expand the resources and services we provide. We will be announcing the details of our Columbus and Cleveland walks soon. They may already be public by the time you read this, so check our website and social media for information. Cincinnati, we need your help to bring the walk back to the Queen City! Admittedly, we have lost touch with

some of you over the last few years. We still have a few rockstars trying to help us, but we need more willing warriors in that part of the state. Please reach out to me or the office so we can reconnect and push forward!

I hope to see you all at our Virtual Support Group Open House later this month! It will provide an excellent opportunity to reconnect with fellow lupians and get involved with our chapter. Additionally, we have some educational programs coming up in April and May. The in person events will be in the Cleveland area, but you can always attend virtually no matter where you are! Speaking of May, Lupus Awareness Month is right around the corner! It provides us with another wonderful opportunity to put a spotlight on lupus and garner some of the financial support I alluded to earlier. If you have buildings or landmarks in your area that light up for charity, please let us know! We would love to turn Ohio purple on May 10th for World Lupus Day. We have a lot to be thankful for and even more to be excited about. Let’s seize the opportunity given to us and keep making an impact and keep growing!

See You Soon!

With a loving heart,

Suzanne

Suzanne Tierney President & CEO

Lupus Foundation of America, Greater Ohio Chapter

CONTENTS

Pg. 1 - 2 Letter from Suzanne

Pg. 4-5 Patient Navigator Corner: Learn to Grow with Lupus

Pg. 6-8 Spring Cleaning Tips for People with Chronic Illness

Pg. 9-10 Upcoming Chapter Calendar/Events

Pg. 11-12 Patient Story: Samantha Sebestinas

Pg. 13 Memorium

Pg. 14 Membership Thank You’s Pg. 15 Blog and Podcast

Pg. 16-17 Get Involved and Ways To Give

Pg. 18-20 Research and News

Pg. 21-23 Living Fit with Lupus By Aaron Meller

Pg. 24-25 Could You Have Lupus?

Pg. 26 Staff Page

6-8 Spring Cleaning Tips for People with Chronic Illness

11-12 Patient Story: Samantha Sebestinas

21-23

13 In Memorium

PATIENT NAVIGATOR CORNER MARCH 2024

|

BY RITA PICCIN

The Patient Navigator program is funded in part by Aurinia Pharmaceuticals and an earmark from the State of Ohio and managed by the Ohio Department of Health.

Welcome back to the Patient Navigator Corner. This month’s magazine theme, “Ready, Set, Grow!” got us thinking about the meaning of the word “grow.”

According to the Merriam-Webster Dictionary, the verb “grow” can mean: “to spring up and develop to maturity; to be able to grow in some place or situation; to increase, expand.”

When we think about our interactions with lupus warriors and caregivers, and the stories that they share, we are reminded of the tremendous challenges they face living with lupus. As lupians and caregivers know firsthand, these challenges can range from mild to severe, annoying to overwhelming, undetectable to life-changing. With every challenge, there are moments and opportunities of grace, of resilience, and of growth - every single day. As patient navigators, we are honored and humbled to be a witness to all of these stories. We can also help lupus warriors and caregivers to overcome

challenges and to grow.

There are several ways patient navigators provide this help. Education provides the beginning steps of growth in understanding and managing lupus. We give information over the phone, by email, by mail, and sometimes by text too. Every patient navigator is ready to answer your questions about lupus. If we don’t know the answer, we will do research to find it. We can recommend our New Patient Education Class for those who are newly diagnosed or have had lupus for years and would like to learn the basics about the disease. We can also suggest articles and past recordings of summits and webinars from our extensive archive of educational materials. These educational offerings help plant seeds of knowledge that lupus warriors and caregivers then “develop to maturity” as they grow with lupus.

Sometimes lupians and caregivers may feel that they are alone

in their lupus journey. They may feel isolated or confused about how to handle the many challenges that come with having a chronic, autoimmune disease. Patient navigators may suggest attending a support group. A support group is not designed to provide professional psychotherapy or counseling. It does help foster open discussion of how lupus affects every aspect of life. Support groups also assist group members in growing skills to deal with their (or a friend or family member’s) life with lupus. The Greater Ohio Chapter has a network of support groups that meet by phone, virtually, or in-person.

Getting involved is an excellent way to grow on your lupus journey and to know that you are working to make a difference. Your involvement helps reach our vision of a life free from lupus and moves the chapter’s mission to improving the quality of life for all people affected by lupus. The benefits of getting involved are

as unique as you are. Patient navigators can help you choose which activities best fit you:

• Advocate - We need your support! Lend your voice to fight for lupus patients’ rights.

• Volunteer - As a state-wide agency, our tasks can be formidable, and we appreciate any help you can give.

• Become a Member - Join our organization to help make a difference in the world of lupus.

• Stay Informed - Sign up for our newsletter and subscribe to our social media platforms.

• Join The Walk To End Lupus Now® - The WTELN is our biggest annual lupus empowerment event and fundraiser. Help us raise funds and walk toward fulfilling our mission and ending lupus.

• Contribute Financially - Make a donation, hold a Facebook fundraiser, host a third-party eventthe possibilities are endless!

• Share Your Story - Everyone can

learn from your unique experience with lupus. Sharing your story can be healing for others and yourself. Consider writing an article for our Living With Lupus magazine, telling your story on our My Lupus Living Room podcast, or contributing to our Lupus Night Light blog.

As you can see, there are many different ways we can help lupus warriors and their caregivers grow in their lupus journey. Please contact the office at 1 (888) NO-LUPUS, (888) 665-8787, (440) 717-0183 or email us at info@lupusgreaterohio. org. You may also contact your regional patient navigator directly. We’d love to hear from you!

President & CEO, Suzanne Tierney

Suzanne@LupusGreaterOhio.org

Lupus Foundation of America, Greater Ohio Chapter Office Main Email

Info@LupusGreaterOhio.org

Lead Patient Navigator & Outreach Coordinator, Rita Piccin, BS, ND, RN

Rita@LupusGreaterOhio.org

Greater Cleveland, Halli Martin

Halli@LupusGreaterOhio.org

Northwest Ohio, Aaron Meller, PTA

Aaron@LupusGreaterOhio.org

Northeast Ohio, Brenda Angle and Renee Lyons

Brenda@LupusGreaterOhio.org

Renee@LupusGreaterOhio.org

Eastern Ohio, Lisa Breiding

Lisa@LupusGreaterOhio.org

Western Ohio, Mike Vollmar, LSW and Justina Patterson

Mike@LupusGreaterOhio.org

Justina@LupusGreaterOhio.org

Central Ohio, Samantha Sebestinas

Samantha@LupusGreaterOhio.org

Southwest Ohio, Allison Fedon and Nikki Roberts

Allison@LupusGreaterOhio.org

Nikki@LupusGreaterOhio.org

Southeast Ohio

Info@LupusGreaterOhio.org

Spring Cleaning Tips

FOR LIFE WITH A CHRONIC ILLNESS

By Adrienne Rice-Fernandez

Life with a chronic illness is hard. Lupus patients often have fatigue, joint pain, strained ligaments, muscular pain, headaches, and a host of other symptoms. These symptoms often interfere with daily life. Many patients also complain that they can’t accomplish as much as their friends. Even though it’s logical to patients that they may not be able to keep up all the time, it still makes them feel inadequate. Lupus patients also feel overwhelmed when the list of things they need to accomplish grows because they have been too ill to check them off their list.

One area of great concern is housework. It is not uncommon for a lupus patient to look around and think, “Where did this mess come from?” There may be a few too many piles of laundry, some stray dust bunnies, and even some food starting to get moldy. Do not panic. Lupus patients may not be able to accomplish everything at once, but they can do many things. Now is the time of year when people begin their spring cleaning. Out with the old, in with the new as they say. This concept may seem insurmountable to a lupus patient, but never fear, these tips

can help keep your home in tiptop shape.

1. Prioritize.

Make a list and rank what is most important to least important.

2. Start Small.

Pick something simple. Don’t start with the idea of cleaning everything. Tell yourself that you are just going to get the dishes done today. Choosing one smaller task helps you feel productive, and it also gets the process going. If you feel well

enough after you finish one task, decide if you can complete another. Maybe you run one load of laundry or clean the litter box. Checking these small tasks off your list eventually enables you to tackle the bigger ones.

3. Choose one room per day.

Cleaning an entire house is overwhelming for anyone, let alone someone living with a chronic illness. Make cleaning easier by picking one room per

day to focus on. Make today the kitchen and then focus on the bathroom tomorrow.

4. Take breaks!

Every 15 minutes, sit down and take a breather. Make sure to stay hydrated and take a few minutes to rest. Then get up and work for another 15 minutes. Continue this (as long as you are able) until today’s room is clean.

5. Utilize your support system and ask for help. If you are in a flare, your job is to rest. This means the house may not be as clean. That’s ok! But be sure to lean on your support system. Ask for their help with some of the “mustdo” tasks. Ask your friend to run a load of laundry or wash and dry the dishes. You’d be surprised how many people are ready and willing to give of their time.

6. Use non-toxic cleaning products.

Try vinegar and baking soda. Sometimes it’s the old-fashioned products that work best. For an easy all-purpose clean-

er, combine one part vinegar with one part water in a spray bottle.

7. Use products that make it easier to clean. Purchase long-handled dusters or spin brushes to clean hard-to-reach areas. Buy a spray bottle that is not too stiff, making it easier on your wrist and finger joints. Consider buy-

ing smaller bottles of cleaning products. Larger containers are heavier to pour.

8. Pat yourself on the back. It isn’t easy battling your own body while tackling spring cleaning. Remember to give yourself praise when you check something off your list, even if it’s small, it’s a huge accomplishment! Well done!

These tips can make spring cleaning easier for lupus patients. Remember to always consult your doctor about your living situation and any physical activities you plan to undertake. And finally, go easy on yourself and remember you can do great things.

Upcoming Chapter Events

March 27th: Virtual Statewide Support Group Open House

7PM - 8:15PM | Online Event

April 6th: Lupus Wellness Event with UH Cutler Center for Men

10 AM - 3 PM | 3999 Richmond Road Suite 3500 Beachwood, Ohio 44122

April 13th: Combing Through Lupus Multiple Locations Statewide!

April 25th: Men’s Minority Health Fair - MetroHealth

MetroHealth Cleveland Heights Medical Center

10 Severance Center

Cleveland Heights, Ohio 44118

May 4th: Scale The Lupus Summit - Cleveland Clinic - Hybrid Event

25900 Science Park Dr Bldg 3 Beachwood, Ohio 44122

May 10th: Put On Purple for World Lupus Day!

May 19th - 22nd: National Advocacy Summit

Capitol Hill - Washington DC

June 3rd: 2024 Applied Underwriters Invitational Golf Outing

Signature of Solon Country Club

39000 Signature Dr, Solon, OH 44139

August 17th: Columbus Walk To End Lupus NOW!

COSI (Center of Science & Industry)

333 West Broad Street Columbus, Ohio 43215

September: Cleveland Walk To End Lupus Now®

Date & Venue TBA

PATIENT STORY

Growing With Lupus

By Samanatha Sebestinas

Being diagnosed at a young age has been a lot for me during my life - some good and some bad. The diagnosis itself has caused my life not to go the way I planned or thought, but it’s surely helped me grow over time.

I was diagnosed with SLE at 18. I was unable to walk or even get out of bed due to extreme pain. I had to figure out a lot of things alone and that was the most terrifying part, because I was not able to rely on family or friends to just hold my hand and tell me everything is going to be okay. It was hard trying to figure out what lupus was and what was happening to my body, along with deciding on what to do with my life now.

As I talked about my diagnosis in the My Lupus Living Room podcast, I was young and scared; and let’s face it, I didn’t know any better. I didn’t want to take my prescribed medication because I just didn’t want to, and it’s hard to swallow pills (it still is, to be honest). When I did take my medi-

cation, I thought they were not working. I thought it would be like taking aspirin for pain. After a few hours, I was expecting the pain to be gone. But with lupus medication, that wasn’t the case. I would still be having extreme pain, and I felt that it was just defeating. Why do I take these pills if I am still in pain, I have horrible side effects, and they taste awful? I kept throwing them back up.

Over time, I was losing hope; and, to be honest, I didn’t want to be here anymore. There were a number of times where I would just sit on the shower floor and sob and think that I didn’t want to do this anymore because the pain was making me miserable. And, there were many therapists I would see and then stop seeing because I thought I wouldn’t be here the next day anyway, so what’s the point? It’s sad to think about it, but it happened and still happens sometimes.

Being a 23-year-old in a world where there is not a lot of informa-

tion and help for disabled people, where social media causes us to think we are supposed to live a certain way or accomplish certain goals, made me feel embarrassed to use things like a cane to walk or a shower chair so I’m not over exerting myself.

It’s hard for me to keep a job in the real world because I can’t stand too long without pushing myself and feeling severe pain the next couple of days and being expected to just push through it.

When I try doing work on a computer, the time spent staring at the computer screen causes me to have horrible migraines. It’s especially hard when you are known for pushing yourself and not giving up. I learned that I have to take care of my mental and physical health and that we should care about ourselves, but it is hard to do so while trying to afford living in the world. It’s a challenge when you want to clean the whole house, cook dinner, go out at the end of the night and hang out with

friends; but you can barely get out of bed due to the pain, fatigue and difficulty breathing. I’ve tried for disability many times; but it seems as if age is just a number, and they don’t even look at symptoms and how difficult it is to work a retail job full-time while standing, walking and dealing with customers. I have truly tried many different jobs to try to find work that I can do.

My relationship with my significant other has also become so challenging, being sick and struggling and not being able to work. Sometimes my boyfriend understands, but with both of us being so young, I feel that I am more of a burden then a partner, which makes things even more stressful and difficult while being sick. All I want is to be loved and cared for; and with an illness, it changes the real meaning of love.

Recently, I was diagnosed with lupus nephritis and to say I was scared out of my mind is an understatement. I’ve been doing infusions since I was diagnosed, been poked with needles endlessly due to having challenging veins, and have had skin biopsies. But in order to get the lupus nephritis diagnosis, I had a needle going into me while being sedated, and I’m all alone with no family or friends, just the nurses. I am tormented because I would rather show I’m happy and not afraid. If I showed what I was really feeling, I wouldn’t be able to stop crying. I am told that my lupus nephritis is stage 3.

This new diagnosis made me feel confused again. I still have problems taking my pills, I still cry in the shower when I’m alone, and I buy so many stuffed toys I’m running out of room - just so I can feel some type of happiness. I see all the people I went to school with accomplishing so many things, marriage, children, great jobs, traveling, while I am trying to figure out living life with lupus. At the time of the lupus nephritis diag-

“Don’t give up. Don’t let your battles defeat you, and remember you are not alone, even if you feel alone and scared.”

nosis, I had no idea that I would be accomplishing the biggest thing yet on my lupus journey - being here today to write my story.

I got a call from a weird number a few months ago. When I answered, they told me it’s the Lupus Foundation of America, Greater Ohio Chapter just checking up and seeing how I am doing. I don’t even remember ever giving my number to the chapter, but it’s so nice to talk to someone else who just understands. The patient navigator is someone who gets me and what I’m going through. She tells me she has all the same symptoms as me, but she is just 4 years older than I am. She says not to give up because even though things seem hard now; over time, it will get better and to keep going.

Something snapped inside me. Maybe this is it, that calling that everyone gets when you find yourself able to get excited and inspired by something, to make a change or have your voice be heard. When you realize maybe crying in the shower everyday because you hate a disease that’s never going away, but you know you are allowed to grieve and to allow yourself time to accept it and try something different. This is the growing stage I am in right now. It’s still hard, because I’m only 23, and I still feel like I’m 18 all the time. I look back on old photos

before getting diagnosed and think to myself, I wish I could go back. But, I think it’s time for me to take pictures of myself today; and I think it’s time to move forward.

Looking back at these past few years, I see that I have accomplished and done so much. I’ve stayed strong and pushed through and conquered the battles as only warriors can. They say God gives his strongest warriors the toughest battle, and if living through a chronic autoimmune disease isn’t a battle, then I don’t know what else would be. I want to move forward and become friends with lupus instead of it always beating me up, even if I still can’t find the right job, even if I can’t achieve what everyone else is doing or posting on social media, even if I can’t look like a supermodel or have that picture perfect life. I know I can still accomplish the greatest goal, to live with lupus and make a difference.

And, so can you! Don’t give up. Don’t let your battles defeat you, and remember you are not alone, even if you feel alone and scared. There is always someone out there who is feeling the same way you do at that exact moment.

For all the young lupus warriors out there, don’t give up. We got this, and don’t forget to grow!

In Memoriam...

2023

Dontasia Nevins

Mary Ann Milo

Nancy Severino

RoseMary Frost

Nicole Crosby

Dorothy Huston

Kimberly Carter

Beverly Walker

Mary Stigamier

Cori Taylor

Lisa Jackson

Carol Thompson

MEMBERSHIP 2023

THANK YOU TO OUR MEMBERS...

Felicia Acord

Dorothy Anderson

Arya Askari

Ali Askari, MD

Susan Bader

Carey Bailey

Stanley Ballou, MD

Dolores Ballou

Amanda Baltrucki

Carolynn Bennett

Dave Benning

Gina Bierman

Mary Louise Bleile Baltes

Karen Braatz

Donald Calkins

Jeannette Chicoine

David Chicoine

Theresa DeMarco

Jenny Demuth

Mychal Dennis

Mary Dzigiel

Linda Earhart

Marie Edwards

Kathryn Ellis

Roger Evans

Lisa Evans

Carol Everett

Maurice Fabbro, Sr.

Anthony Fernandez, MD, PhD

Fran Fisher

Gwen Ford

Cobb Ford

Lou Freiberg

Michelle Gaffney

Mary Alice Garey

Ernest Genovese

Michael Genovese

Roxanna Giambri

Nancy Goldberg

Lakisha Green

Katie Gugle

Joyce Hale

Bonnie Harris

Connie Hassing

Lee Hebert

Marlene Herman

Jeff Hesler

Janice Hlavaty

Carol Hoffman Vicario

Kathleen Holmes

Pam Honsa

Richard Horvitz

Judy Hronek

Virgil Humphreys

Beverly Humphreys

Roy Hurley

Lynne Hutchison

Jennifer Isler

Rita Janicki

Dotty Kaufman

Laurie Kemer

Bryan Knepper

Linda Knepper

Charlie Koleno

Toni Koleno

Carole Kopnicky

Ron Kubinski

Eugene Kyles

Maryann Lape

Robert Lape

William Ledger

Betsy Lee

Katherine Littman

David Mandel, MD

Charles Marshall

Judy Martin

David Masciarelli

Sandy Matthias

Suzanne McGinnis

Toni Mckenzie

Joe McMullin

Sharon Renee McRary

Melvin E. Lowe Trustee

Kathy Merriner

Gerald Molitoris

Mary Cay O’ Malley

William Omahen

Neva Pawlikowski

Nancy Pazelt

Vasile Peicu

John Peters

Sharon Petit

Greg Petrus, PhRMA

Thomas Pindroh

Richard Ranallo

JD Robinson

Kathleen Russell-Rader

Anthony Sagaris

George Sagaris

Daniel Sarich

Raymond Sarria

Rachel Scava

Jenny Senyitko

Mark Shelton

Jim Shiner

Judy Shiner

Sue Slater

Sherri Smith

Jacqueline Sopko-Crolius

Thomas Stahl

Linda Steele

David Stewart

Thomas Surovey

Patrick Sweeney

Sam Sylk

Ashley Tabar

Helen Talarico

Beatrice Tec

Kris Thomas

William Tierney

Suzanne Tierney

William Tierney III

Leslie Vizcara-Tierney

Joyce Truse

Rochelle Truskolaski

Jeannine Valenti

Carolyn Vander Stouw

Ellie Vinczi

Rose Ward

Janice Washington

Kenneth Wayman

Karen Webb

Kathleen Weiss

Elizabeth West

Susan West

Mark Wester

Lynn Wester

Ruth Whiley

Dori Lynn White

Jerome Wiedmann

Sandra Williams

Jeffrey Wisnieski, MD

Barbara Wonsetler

Maria Woyma

Cynthia Wuertz

LFA,GOC BLOG & PODCAST

My Lupus Living Room

Episode 31 - Dr. Hermine Brunner, MD, MSc, MBA

In this episode of My Lupus Living Room, Suzanne connects with Dr. Hermine Brunner, Director of Rheumatology, at Cincinnati Children’s Hospital. Dr. Brunner discusses pediatric lupus nephritis, and her exciting project known as the PLUMM Study!

Episode 32 - Samantha - Patient Navigator

Suzanne sits down with our newest Patient Navigator, Samantha Sebestinas, to discuss her lupus journey, role at the chapter, and so much more. If you would like to share your story, or have a topic you think would benefit lupus patients, contact our show’s producer, Alex. Alex@lupusgreaterohio.org

Lupus Night Light

Our blog, Lupus Night Light, is a place where we share stories and practical advice from patients that they have learned along their lupus journeys. You will find stories of triumph, hardship, and everything in between. It is meant to be a cathartic journey for both the contributors and readers alike.

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: 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

Become a Member

One-year: $25 Lifetime: $200 lupusgreaterohio.org/get-involved

GET INVOLVED

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.

Advocacy

Each year, the National Lupus Advocacy Summit brings together the lupus community to pursue a collective vision of a world without lupus. In addition, we help to ensure there is

a cohesive voice heard in Washington, D.C. that ensures the lupus agenda is at the forefront of the legislature. Last year’s National Lupus Advocacy Summit was held June 26 - 28 and featured a few of our amazing Ohio advocates. Thank you to those who participated!

We invite you to register to be a lupus advocate in Ohio. Our current initiative is to keep lupus in the state budget for the new biennium. Much of the educational and support programming produced by the LFA, GOC over the past two years has been a direct result of the funding provided by the state of Ohio and the Ohio Department of Health. It is imperative that we let Ohio’s leadership know the importance of keeping lupus in the public health agenda. lupusgreaterohio.org/ get-involved/advocate

WAYS TO GIVE

Traditional

• Checks

Please make checks payable to the Lupus Foundation of America, Greater Ohio Chapter, and mail them directly to:

12930 Chippewa Road, Brecksville, Ohio 44141.

• Credit Card + PayPal

Fill out the online donation form or call the office.

• Facebook Fundraisers

• Instagram Stories

In Honor of

• Memorial Donation

• Tribute Donation

Through Your Job

• Employer Matching Gift Program

Ask your employer if they match charitable contributions made by their employees.

• Combined Federal Campaign CFC #51890

Investing

• Stock or Other Securities

• Life Income Plans Pooled Income Fund Charitable Remainder Trusts

• Creating Healthier Communities CHC #9963

• United Way Campaigns

Other

• Donatestuff.com

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

• Leave a Bequest

You can include the LFA, GOC in your will to support the mission beyond your lifetime.

• Give the Gift of Life Insurance

Name the LFA, GOC as a sole or partial beneficiary.

For more information on ways to give, please visit: lupusgreaterohio.org/get-involved/ donate or call our office at 1 (888) NO-LUPUS.

RESEARCH NEWS & UPDATES

New Study Finds Possible Linkage to Autoimmune Prevalence in Women

It’s been established that autoimmune diseases, including lupus, disproportionately affect women more than men, but researchers have long wondered why. In a new study, researchers found that the additional X chromosome in women might play a role in autoimmune disease propensity, specifically a special type of ribonucleic acid or RNA called “Xist” (pronounced “exist”).

While the gene for Xist is found on all X chromosomes, it is only produced when there are two X chromosomes which is why it is only found in biological women. Xist attaches to the long stretch

of RNA found on the additional X chromosome and inactivates the other X chromosomes’ genetic output. Xist attracts proteins that bind to it and trigger a strong immune response in the body. Many of those proteins are associated with autoimmune diseases.

In the study, researchers inserted the gene for Xist into male mice to see if they became susceptible to autoimmune diseases. They found the male mice with the active Xist gene developed lupus-like autoimmunity at rates similar to that of females. While Xist alone didn’t cause all the mice to develop autoimmune disorder-like conditions, it

showcases there are other influences at play that contribute to disease development. In addition, researchers also examined blood samples from 100 people with autoimmune disease and 20 without autoimmune diseases. They found people with autoimmune diseases had more disease-specific Xist autoantibodies in their blood, which could help with future diagnosis and treatment.

This research could be a breakthrough in the field and could lead to the discovery of new interventions and new ways to diagnose many autoimmune diseases.

CAR-T Cell Therapy Shows Promising Results for People with Lupus and Other Autoimmune Diseases

A new study found CD19 CAR-T cell therapy to be a potentially safe and effective treatment for people living with systemic lupus erythematosus (SLE), idiopathic inflammatory myositis (a group of disorders characterized by inflammation of muscles used for movement), and systemic sclerosis (an autoimmune disease that makes your skin and organs stiff and scarred due to abnormal growth of connective tissue).

Researchers studied 15 people, including 8 people with severe SLE. Before each person received a single infusion of CD19 CAR-T cells, they underwent chemotherapy to clear their immune system. After two years, researchers tested for efficacy and found people living with SLE or idiopathic inflammatory myositis had complete resolution of disease symptoms. Additionally, people living with systemic sclerosis saw their symp -

toms significantly improve with reduced severity of skin and lung disease.

Researchers believe that a single injection of CD19 CAR-T cell therapy could possibly lead to long-lasting remission, but future clinical studies are needed to confirm sustained disease and drug-free remission.

Potential New Biomarker for Systemic Lupus

Erythematosus

A new study looked at the possibility of a causal relationship between interleukin-18 (IL-18) cytokine and the risk of inflammatory and autoimmune diseases such as systemic lupus erythematosus (SLE). Cytokines are proteins released by cells that have an effect on the interactions, communications or behavior of cells, and include molecules (interleukins and interferons) that trigger inflammation and response to in-

fections. A positive association was discovered between genetically predicted IL-18 and SLE. Previous research showed that IL-18, which is a proinflammatory biomarker can be reduced when inflammation is present.

Researchers analyzed genetic data associated with IL-18 from a study involving 21,758 individuals of European descent. They noted levels of IL-18 in people with inflamma-

tory and autoimmune diseases. Results showed a statistically significant or positive association between IL-18 and the risk of SLE as well as Type 1 diabetes.

While the research suggests that IL-18 levels are associated with risk of SLE, more studies are needed to establish presence of IL-18 as a potential biomarker for SLE treatment.

LIVING FIT WITH LUPUS

By Aaron Meller, Physical Therapy Assistant and LFA, GOC Patient Navigator

Living with lupus poses unique challenges, especially when it comes to maintaining physical activity. The pain and fatigue associated with this autoimmune disease can make exercise seem like an uphill battle. However, incorporating safe and mindful physical activity into your routine can significantly contribute to overall well-being for individuals with lupus.

Understanding the Challenges

Lupus is a chronic autoimmune disease that can affect various organs and systems within the body. Pain, fatigue, joint stiffness, and muscle weakness are common symptoms that often deter indi-

viduals from engaging in physical activity. It’s crucial to acknowledge these challenges and tailor an exercise routine that caters to the specific needs and limitations of those with lupus.

Consultation with Healthcare Professionals

Before embarking on any physical activity, it’s important to consult with your healthcare provider. Lupus manifests differently in each individual, and what works for one may not work for another. A thorough assessment by healthcare professionals can help determine the level of activity that is safe and suitable for your condition.

Embrace Low-Impact Activities

Low-impact exercises are gentle on the joints and muscles, making them ideal for individuals with lupus. Activities such as walking, swimming, and cycling provide cardiovascular benefits without putting excessive strain on the body. These exercises promote circulation, enhance flexibility, and can be tailored to suit individual fitness levels.

Gradual Progression

Patience is key when incorporating physical activity into a lupus-friendly lifestyle. Begin with short durations of low-intensity

exercises and gradually increase the intensity and duration as your body adapts. Listening to your body and avoiding overexertion is crucial to prevent flare-ups and manage fatigue effectively.

Flexibility and Strength Training

Engaging in activities that promote flexibility and strength can be particularly beneficial for individuals with lupus. Yoga and Pilates are excellent choices as they focus on controlled movements that enhance flexibility and strengthen muscles. These practices also promote relaxation and stress reduction, which are essential elements for managing lupus symptoms.

Adaptive Exercise Strategies

Incorporating adaptive exercise strategies is key to tailoring physical activity to individual needs. Working with a physical therapist or certified fitness professional experienced in autoimmune conditions can provide personalized guidance. These experts can create a customized exercise plan that considers your unique symptoms, ensuring a safe and effective workout routine. Adaptive strategies may involve modifying traditional exercises to accommodate limitations. For instance, using resistance bands or supportive props during workouts enhances comfort and stability.

Mind-Body Practices for Holistic Well-being

Mind-body practices such as meditation and deep breathing exercises contribute significantly to holistic well-being. Incorporating these practices into your routine can help manage stress, which is a common trigger for lupus flares. Mindfulness techniques not only promote mental clarity but also aid in pain management, making them valuable additions to your overall wellness plan.

Social Support and Motivation

Maintaining an active lifestyle with lupus can be challenging, but having a reliable support system can make a significant difference.

Share your fitness journey with friends, family, or members of lupus support groups. Their encouragement and understanding can provide the motivation needed to stay consistent with your exercise routine. Consider finding a workout buddy who can join you in low-impact activities, fostering a sense of camaraderie while staying active.

Regular Monitoring and Adjustments

As the dynamic nature of lupus symptoms may lead to fluctuations in energy levels and pain, it’s essential to regularly monitor and adjust your exercise routine. Keep a journal to track your physical

activity, energy levels, and any changes in symptoms. This documentation can help you and your healthcare team identify patterns and make necessary adjustments to optimize your fitness plan.

Celebrate Small Victories

Living with lupus requires resilience and adaptability. Celebrate small victories along your fitness journey, whether it’s completing a gentle yoga session or taking a leisurely walk. Recognizing and acknowledging your achievements, no matter how modest, fosters a positive mindset and encourages ongoing commitment to a physically active lifestyle.

Conclusion: Empowering Wellness Through Movement

Navigating physical activity with lupus necessitates a balanced approach that prioritizes safety, adaptability, and holistic well-being. By incorporating adaptive strategies, embracing mind-body practices, seeking social support, and regularly monitoring and adjusting your routine, you empower yourself to maintain a healthy and active lifestyle despite the challenges posed by lupus. Remember, your well-being is a journey, and each step towards physical activity is a step towards nurturing your overall wellness.

Could You Have Lupus?

Lupus is a chronic autoimmune disease that causes inflammation in various parts of the body. The disease can r a nge from mild to li f e - threatening. Ninety percent of those d i a g n osed with lupus are females between ages 15 and 44, but lupus also occurs in men, older people, and children. Lupus can be very hard to diagnose because symptoms vary from person to person, can come and go, and can mimic symptoms of other illnesses. is important to know the symptoms of lupus and to know if you are at risk for this disease. Here is a simple test to help you. Read each question and answer it in terms of your current AND past health.

Brain and Nervous System

Have you had a seizure or convulsion?

Have you had unexplained confusion that lasted more than an hour?

Have you had unexplained fever higher than 100º F/38º C for more than a few days that was not due to infection?

Heart and Lungs

Have you felt chest pain while taking deep breaths?

Have you had a stroke or heart attack?

Kidneys

Have you been told you have protein in your urine?

Have you had swelling in your legs and ankles on both sides at the same time?

Blood and Circulatory System

Have you been told you have anemia, low white cell count, or low platelet count?

Have your fingers and/or toes become pale or red or blue, or felt numb or painful?

Have you had blood clotting problems or a miscarriage?

If you have had any symptoms like these, especially if you have had several, talk to your doctor about lupus. Early diagnosis and proper medical care are the best ways to manage lupus.

Eyes, Nose, and Mouth

Have you had sores in your mouth or nose that lasted more than five days?

Have you developed irritation or dryness in your eyes or mouth for more than a few weeks?

Stomach and Intestines

Have you had unexplained weight loss or abdominal pain or tenderness when your belly is touched?

Muscles and Joints

Have you had stiff, tender, and swollen joints that feel worse in the morning?

Have you had extreme fatigue and weakness for days or weeks at a time, even after plenty of sleep?

Skin

Has your skin broken out after being in the sun, but it’s not a sunburn?

Have you had redness or rash across your nose and cheeks in the shape of a butterfly?

Have you had sores on your skin that would not heal?

Have you had sudden, unexplained hair loss?

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.

Mackenna Willis Creative Design Manager

Mackenna@lupusgreaterohio.org

I’m the marketing manager and creative developer when it comes to strategizing new ideas for Lupus awareness. As a graduate from Bowling Green State University with a BFA in graphic design, I’ve always envisioned utilizing my skills to make a difference. My enthusiasm to help others through design has always been a passion of mine and having the opportunity to share and grow with the LFA, GOC team has been nothing but inspiring.

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.

Community Outreach Coordinator

Aletha@lupusgreaterohio.org

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

chapter continue to grow and help lupus patients for years to come.

Rita O. Piccin, BS, ND, RN Lead Patient Navigator /Outreach Coordinator

Rita@lupusgreaterohio.org

I am a caring, collaborative, and resourceful nursing professional with over 30 years of experience in a variety of roles. I have a BS in Biology and French from John Carroll University and a Doctor of Nursing degree from Frances Payne Bolton School of Nursing at Case Western Reserve University. I am passionate about giving effective and empathetic customer service and education to patients, caregivers, families, colleagues and community organizations. I am honored to be a part of the LFA,GOC and dedicated to providing education, support, and resources to lupus warriors.

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