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My Lupus Living Room

English, Health / Medicine, 1 season, 40 episodes, 21 hours, 46 minutes
About
The Lupus Foundation of America, Greater Ohio Chapter welcomes 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. Thanks for stopping by My Lupus Living Room. We hope you stay for a while.
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Episode 40 - Chad Limones - Aurinia Pharmaceuticals

On this episode Suzanne is joined by Chad Limones from Aurinia Pharmaceuticals to discuss lupus nephritis. The two have a broad conversation about what exactly lupus nephritis is, the warning signs, and what resources are available for patients that have been diagnosed or suspect they have lupus nephritis. The information discussed is not meant to treat, diagnose, or otherwise recommend specific treatment plans to patients. Always discuss what options are best for you with your medical team first! Want to share your lupus story? Email our shows producer, Alex Acevedo, to book your appearance! [email protected]
10/15/202428 minutes, 19 seconds
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Episode 39 - William Fikter, MD

Suzanne sits down with Dr. William Fikter, a Psychiatrist, with Signature Health. They discuss the challenges that lupus patients may face with mental health and the ways that Signature Health and the LFA,GOC can help! If you would like to share your story, or have a topic you think would benefit lupus patients, contact our shows producer: Alex Acevedo [email protected] 440-717-0183
9/26/202448 minutes, 47 seconds
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Episode 38 - Steve Perhach - Being a Supportive Partner

Suzanne sits down with Steve Perhach to talk about his experience with being married to someone with lupus.  Steve’s wife, Kelly, is a brave lupus warrior who has had her share of ups and downs throughout her journey.  They are both heavily involved in their community and spend time volunteering at various organizations If you would like to share your story, or have a topic you think would benefit lupus patients, contact our shows producer Alex by email - [email protected] Check out our channel ⁠ @lupusgreateroh 
8/29/202441 minutes, 53 seconds
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Episode 37 - Hannah Powell

Suzanne joined by Hannah Powell, a relatively newly diagnosed patient who has already had her fair share of trials and tribulations. Hannah talks candidly about her diagnosis, the challenges she's faced and what finding the Walk To End Lupus Now has meant to her. If you would like to share your story, or have a topic you think would benefit lupus patients, contact our shows producer Alex by email - [email protected] Check out our channel  @lupusgreateroh 
7/24/202438 minutes, 23 seconds
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Episode 36 - Steve Morris - Intervention Point

Suzanne sits down with Steve Morris of Intervention Point to discuss the benefit of setting up a trust and what it could mean for your family. Not only can they provide security, and peace of mind, but also keep the courts and government from complicating things when that time comes. To learn more about setting up a trust email [email protected]
6/24/202428 minutes, 2 seconds
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Episode 35 - Links For Lupus

Kelly Perhach stopped by the office to provide a recap of her recent Links Fore Lupus golf outing. Kelly holds many fun and unconventional fundraisers throughout the year to raise money for our chapter and we are beyond thankful for all of her efforts! If you would like to share your story with lupus and help inspire others please email [email protected]
5/27/202414 minutes, 8 seconds
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Dr Van Warren- Patient Panel

For this month's episode we wanted to share Dr. Van Warren's presentation from our Passport to Better Health event in April. Dr. Warren provides a broad overview of lupus and answers patient questions.
4/16/202430 minutes, 53 seconds
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Episode 33 - Ashley Houston - Honoring Dontasia Nevins

On this episode Suzanne sits down with Ashley Houston. Ashley's sister, Dontasia Nevins, passed away in January of 2023 from complications of lupus. Ashley discusses her sisters battle with lupus, keeping her memory alive, and what she does to raise awareness for lupus warriors! Visit https://www.facebook.com/OhioSkateForLife to learn more about the incredible work they do. If you would like to share your story with lupus and help inspire others please email [email protected]
3/4/202440 minutes, 54 seconds
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Episode 32 - Samantha - Patient Navigator

Suzanne sits down with our newest Patient Navigator Samantha 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 shows producer Alex. [email protected]
2/8/202436 minutes, 21 seconds
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Episode 31 - Dr. Hermine Brunner, MD, MSc, MBA

On this episode of My Lupus Living Room Suzanne connects with Dr. Hermine Brunner, Director of Rheumatology, at Cincinnati Children's Hospital. Dr. Brunner discuss pediatric lupus nephritis, and her exciting project known as the PLUMM Study!
1/20/202430 minutes, 41 seconds
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Episode 30 - Patti Esparza

Suzanne sits down with Patti Esparza to discuss Patti's remarkable journey with lupus nephritis. Patti opens up about the the challenges she faced including a having a kidney transplant as well as the importance of having a strong support system to lean on along the way. If you would like to empower fellow lupians by sharing your journey please email [email protected]
1/4/202437 minutes, 29 seconds
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Episode 29 - Lisa's Lucky Lupus Journey

Alex sits down with Lisa Brieding on this episode of the podcast. Lisa shares her story of getting diagnosed with lupus, becoming a facilitator & patient navigator with our chapter, and why she feels lucky when it comes to her journey!
12/1/202349 minutes, 51 seconds
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Episode 28 - Alex - Digital Assets Manager

With Suzanne on vacation, our Lead Project Coordinator, Adrienne Fernandez takes the helm for this episode of My Lupus Living Room. Adrienne sat down with Alex, our Digital Assets Manager, to learn a little more about him and what he does here at the LFA, GOC. They also give a sneak peak at what our constituents can expect from the chapter in the next year!
10/30/202321 minutes, 58 seconds
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Episode 27 - A Covid Story

In this episode of My Lupus Living Room Adrienne shares her recent experience with Covid and the struggles she faced. Suzanne is also joined by our Lead Patient Navigator, Rita Piccin BS, ND, RN and the group discusses the uptick in cases, getting the new vaccine, and what patients should do to protect themselves.
9/29/202323 minutes, 55 seconds
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Episode 26 - Bryan - Development Manager

On this episode of My Lupus Living Room Suzanne sits down with our new Development Manager, Brian Haynes. Brian shares a little bit of his background and provides updates on some of our fundraising events coming up.
6/29/202319 minutes, 22 seconds
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Episode 25 - Mi Sala de Estar Con Lupus en Espanol

On this episode of My Lupus Living Room our board chair, Maria Rey Woyma, sits down with Gabriela Sison, MSN, BSN, RN of GSK. Both women are fluent in spanish so we took this opportunity to record this podcast that caters to our spanish speaking audience.
5/30/202330 minutes, 28 seconds
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Episode 24 - Bev & Virgil - Conquering Lupus & Life Together

In episode 24 Suzanne sits down with Bev & Virgil at the LFA, GOC office. This wonderful couple shares their amazing journey and the lessons they learned along the way. Their story is a lesson in strength, love, and perseverance!
4/28/202343 minutes, 39 seconds
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Episode 23 - Dr. Emily Littlejohn, DO, MPH

On this episode of My Lupus Living Room, Adrienne fills in for Suzanne and sits down with Dr Emily Littlejohn, DO, MPH from the Cleveland Clinic. She may be our most accomplished guest yet, and while she did complete her Rheumatology Fellowship at that school up north, she's made up for it in spades by helping countless lupus patients across Ohio. We've put her resume below: Emily Littlejohn completed her undergraduate education at Georgetown University, where she received a B.S in Human Science. After college she moved to Boston where she received a M.P.H in Epidemiology from Boston University of Public Health. She then attended Medical School at Western University College of Osteopathic Medicine of the Pacific (COMP) where she was awarded a research fellowship in the Department of Biotechnology. She went on to complete her Internal Medicine Residency at Loyola University Medical Center in Chicago, IL and Rheumatology Fellowship at the University of Michigan where she worked closely with lupus patients and became interested in this complex and elusive disease. She joined the medical staff in the Department of Rheumatic and Immunologic Diseases at Cleveland Clinic in 2017 and holds a faculty position of Clinical Assistant Professor in the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University. She directs the Cleveland Clinic Lupus Cohort (CCLC), a longitudinal bio repository that banks blood and urine of lupus patients and is co- director of the Lupus Clinic.
3/25/202322 minutes, 1 second
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Episode 22 - Lupus Warrior Spotlight - Kelly

In this edition of My Lupus Living Room, Suzanne sits down with Kelly Perhach.  Kelly shares all of the ups and downs of her lupus journey.
3/1/202350 minutes, 20 seconds
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Episode 21 - The Vegan Vixen

Today we have the pleasure of sitting down with Chef Chanel Nowel, AKA The Vegan Vixen!  She shares her lupus journey and how she uses a plant based diet to manage her lupus.  
1/13/202335 minutes, 31 seconds
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Episode 20 - Navigating The Holiday's

While the holiday's are supposed to be an exciting time filled with family and love, they can be extremely tough for lupians.  We discuss tips and tricks to make sure your holiday season is joyous and filled with cheer, and provide an overview of the year ahead at LFA, GOC.  
12/23/202220 minutes, 24 seconds
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Episode 19 - Thankful, Grateful, and Ready To Keep Fighting!

As the embark on another holiday season, we are grateful for our brave lupus warriors, and supporters who fight with us everyday in the battle to End Lupus Now!
11/23/20225 minutes, 7 seconds
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Episode 18- Let's Make Noise About Lupus! (Featuring Rachelle Roy)

We are SO exited to bring you this new episode of My Lupus Living Room!  Suzanne talks to Rachelle Roy, who is a patient who is ON FIRE about spreading lupus awareness in Toledo. Rachelle has done so much for lupus, including gaining extensive media coverage on her events. You are going to see her at the Walk To End Lupus Now® on Saturday and you cant miss her! Her enthusiasm is contagious!  If you are a patient in the Toledo area, Rachelle would love to know your name.  We know you are going to really enjoy this episode! 
9/22/202238 minutes
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Episode 17- 2022 Walk To End Lupus Now®

The Walk To End Lupus Now® will be on September 24th in Cleveland Ohio.  This walk is going to be hybrid, which means you can also join in online! The walk will be held at the Hofbräuhaus by Playhouse Square!  We will be walking through some pretty cool places, including Cleveland State university! We are so excited to be back in person and we hope to see you there! Click the link to register and to learn more! https://www.lupusgreaterohio.org/walktoendlupus/
8/22/202222 minutes
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Episode 16- Meet Mackenna!

On this Episode of My Lupus Living Room, Suzanne sits down with Mackenna Willis, another new addition to our LFA, GOC team!  Mackenna is our wonderful new Graphic Designer who has quite a story herself.  Mackenna tells us about her battle with Brain Cancer; the highs, the lows, and all of the things she has learned along the way.  We are happy to say that she has been in remission for a while!  We think you are really going to like this episode!
7/20/202214 minutes
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Episode 15- Meet the Newest Member of the LFA, GOC Team!

On this episode of My Lupus Living Room, Suzanne Sits down With Amy Filbert, the newest member of the LFA, GOC team!  Amy is an intern here at the foundation, as well as a lupus warrior!  She talks about her diagnosis journey and all of the ups and downs of getting to where she is now.  We are so happy to have Amy in our office and we hope you enjoy this episode! 
6/28/202221 minutes, 37 seconds
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Episode 14- Hayley Shasteen on Growing up with Lupus

On this episode of My Lupus Living Room, Suzanne talks to Hayley Shasteen. Hayley is a lupus warrior with a passion for understanding the disease. She recently received her Masters from Kent State University and is an incoming Ph.D. student at Pennsylvania State University. In this episode, Hayley talks about her diagnosis journey, her experience of going from a teen to an adult with lupus, and what it is like being a patient and an avid researcher. She is a very accomplished young woman at the age of 24 and we are so excited to welcome her to our living room! 
5/23/20221 hour, 1 minute, 36 seconds
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Episode 13- Cat's Amazing Journey

In this episode of My Lupus Living Room, Suzanne talks to Cat Liptak.  Cat is a fellow lupian who has been with the foundation for years.  She has faced many many hardships due to lupus and has an incredible story to share.  Cat is also the leader of the prayer group, Lupians Leaning on the Lord.  We hope you enjoy this episode of My Lupus Living Room!  For more information on Cat's prayer group, please email us at [email protected].  
4/27/202237 minutes, 20 seconds
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Episode 12- Allison's Story

Hello!  We have a great new episode of My Lupus Living Room!  On this episode, Suzanne talks to Allison Fedon. Allison is a patient navigator for the Cincinnati area. She talks about her journey with lupus, as well as her experience as a patient navigator at the LFA, GOC.  If you want to reach out to Allison, her email is [email protected].  We hope you enjoy this episode!   *The Lupus Foundation of America, Greater Ohio Chapter does not give medical advice to patients regarding their lupus treatment. Your physician is the best source of information regarding the medical management of your lupus. This program is available for informational and educational purposes only. The content provided by other providers and/or professionals within the context of this program is not necessarily the opinion of the Lupus Foundation of America, Greater Ohio Chapter. The funding for this campaign is from an earmark from the State of Ohio and managed by the Ohio Department of Health.
2/16/202246 minutes, 2 seconds
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Episode 11- New Year, New Programs!

 In this episode of My Lupus Living Room, Suzanne Talks to Rita Piccin, a Patient Navigator and newest employee of the LFA, GOC.  Rita tells us all about the wonderful projects she has been working on and Suzanne talks about some exciting new programs coming in 2022!  This is a great episode to kick off the new year and we hope you enjoy listening to it!  *The Lupus Foundation of America, Greater Ohio Chapter does not give medical advice to patients regarding their lupus treatment. Your physician is the best source of information regarding the medical management of your lupus. This program is available for informational and educational purposes only. The content provided by other providers and/or professionals within the context of this program is not necessarily the opinion of the Lupus Foundation of America, Greater Ohio Chapter. The funding for this campaign is from an earmark from the State of Ohio and managed by the Ohio Department of Health.
1/18/202231 minutes, 16 seconds
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Episode 10- How Can I Get Social Security Disability Benefits?

In this episode of My Lupus Living Room, Suzanne talks with Michael Liner from Liner Legal. Michael founded Liner Legal in 2013 and is one of the top Disability Attorneys in the nation. Michael loves helping those in need,  and he has helped many (including people with lupus) obtain the funds they need in social security benefits. If you want to learn more about Liner Legal, you can go to linerlegal.com. We hope you enjoy this episode! *The Lupus Foundation of America, Greater Ohio Chapter does not give medical advice to patients regarding their lupus treatment. Your physician is the best source of information regarding the medical management of your lupus. This program is available for informational and educational purposes only. The content provided by other providers and/or professionals within the context of this program is not necessarily the opinion of the Lupus Foundation of America, Greater Ohio Chapter. The funding for this campaign is from an earmark from the State of Ohio and managed by the Ohio Department of Health.
12/9/202133 minutes, 41 seconds
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Episode 9- Katie's Story

On this episode of My Lupus Living Room, Suzanne talks to Katie Gugle! Katie is a long time constituent of the Lupus Foundation of America, Greater Ohio chapter, and a Support Group Facilitator for our Westerville Support Group!   In this episode, she talks about her story with lupus as well as multiple other autoimmune diseases and how she manages them.  We are so glad we were able to speak to her and we hope you enjoy this episode! 
11/2/202133 minutes, 42 seconds
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Episode 8- ALL IN for Lupus Nephritis with Aurinia Pharmaceuticals Inc.

On this episode of My Lupus Living Room, Suzanne talks with Shannon Cabot from Aurinia Pharmaceuticals Inc..  Shannon is in charge of Regional Professional Relations & Advocacy and she talks about ALL IN for Lupus Nephritis.  The ALL IN program and website is a source of information, resources, and support for those affected by lupus nephritis. To learn more about lupus nephritis, go to www.allinforlupusnephritis.com.  We hope you enjoy this weeks episode! *The Lupus Foundation of America, Greater Ohio Chapter does not give medical advice to patients regarding their lupus treatment. Your physician is the best source of information regarding the medical management of your lupus. This program is available for informational and educational purposes only. The content provided by other providers and/or professionals within the context of this program is not necessarily the opinion of the Lupus Foundation of America, Greater Ohio Chapter. The funding for this campaign is from an earmark from the State of Ohio and managed by the Ohio Department of Health.
8/18/202130 minutes, 25 seconds
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Episode 7- A Mans Inspiring Journey with Lupus Nephritis

Lupus comes in many forms, but lupus nephritis is probably one of the most serious. In this episode of My Lupus Living Room, Suzanne talks to Ryan Pike about his long and inspiring journey with lupus nephritis. Ryan is the Client Success Manager at Terraboost Media and has done work for the LFA, GOC in the past.  Ryan was diagnosed with lupus when he was a teenager and has been on quite a journey! He is truly inspiring with his positive attitude and commitment to a healthy lifestyle. We think you will enjoy this episode! 
7/1/202131 minutes, 38 seconds
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Episode 6- ExactCare Pharmaceuticals

This week, Suzanne talks to Margaret Lizotte, Vice President of Clinical Development at ExactCare.  We have some exciting news to share with you regarding Hydroxychloroquine.  Listen to the episode to find out more! *The Lupus Foundation of America, Greater Ohio Chapter does not give medical advice to patients regarding their lupus treatment. Your physician is the best source of information regarding the medical management of your lupus. This program is available for informational and educational purposes only. The content provided by other providers and/or professionals within the context of this program is not necessarily the opinion of the Lupus Foundation of America, Greater Ohio Chapter. The funding for this campaign is from an earmark from the State of Ohio and managed by the Ohio Department of Health.
5/27/202134 minutes, 16 seconds
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Episode 5- The COVID-19 Vaccine from Patients' Perspective

The Covid-19 Vaccine is here, and we're all eager to ensure our safety. But as a lupus patient, you might have more questions. Should you get it? Is it safe? Will it cause a flare? What are the side effects? What is the process? We hear you, and we want to answer your questions. On this episode of My Lupus Living Room, Suzanne sits down with lupus patients, Adrienne Fernandez and Kathy Holmes to talk about their experiences getting the COVID-19 vaccine. We hope you find this episode helpful!
4/9/202132 minutes, 37 seconds
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Episode 4- All About Hair!

For many lupus patients, hair loss is a real issue. How can we prevent hair loss and hair damage? What products should we use to protect our hair? What kinds of wigs are worth looking into? In this episode, Suzanne talks with stylist and Salon owner Rachelle Yarnell about all things hair! Rachelle has been working with hair for years, and she is the owner of The Studio Hair salon, Studio3 Hair Salon, and Facet Hair Salon. In this episode, she answers those important questions about hair loss. If hair loss affects you, consult a hair specialist before trying to do something on your own. 
3/3/202133 minutes, 10 seconds
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Episode 3- Preparing for the Unknown

The future is so unknown, especially in today's world. How can we prepare for the future when we have no idea what could happen? What if something does happen? In this episode, our host Suzanne talks to attorney David Santoli about those what if's. Suzanne and David tell us what we can do to make sure that our friends and family are taken care of if something goes wrong. This is such an important topic that can be easy to ignore, but now is the time to address it. For more information, You can email the Cleveland Metropolitan Bar Association at [email protected].
2/10/202143 minutes, 54 seconds