My Lupus Living Room
The Lupus Foundation of America, Greater Ohio Chapter presents a podcast about living with lupus. Host Suzanne Tierney, the chapter's President and CEO, has candid conversations with patients, caregivers, and medical experts. They discuss often-overlooked topics, sharing highs, lows, insights, and advice. The show aims to create a supportive space for the Ohio lupus community.
Episodes
Riding Through The Lupus Storm
Courtney joins the podcast to talk about her journey with lupus and share the details of an upcoming Motorcycle Ride she is helping to organize to raise money and awareness. She is joined by Michael from Punishers LEMC which is the club hosting the event! Michael shares a little bit of the history of Punishers LEMC as well as why its important to give back to the community.
Biologic Treatments For Lupus Patients
Dr Vicki Nahra from University Hospitals in Cleveland joins Suzanne to discuss biologic therapies available for lupus patients! Want to share your lupus story? Email our shows producer, Alex Acevedo, to book your appearance! Alex@lupusgreaterohio.orgUpcoming Events: https://linktr.ee/lupusgreateroh🎗️ Lupus Foundation of America, Greater Ohio Chapter (LFA-GOC)We’re a 501(c)(3) nonprofit organizati
Lupus Mail Lady Uses Influence To Deliver Awareness and Hope!
Rachelle Roy shares her journey overcoming discoid lupus, taking pride in her work and serving her community. She is well traveled, hopelessly optimistic, and a beacon of light in the community she serves!🎗️ Lupus Foundation of America, Greater Ohio Chapter (LFA-GOC)We’re a 501(c)(3) nonprofit organization improving the lives of those affected by lupus through research, education, support, and adv
Chef Finds Her Recipe For Thriving With Lupus
Latasha has been living with lupus for the last 25 years. As a Chef by trade often working 10-12 hours per day, she has her good days and bad. Latasha shares how her unbreakable spirit and can do mindset has allowed her weather every storm and persevere!Want to share your lupus story? Email our shows producer, Alex Acevedo, to book your appearance! Alex@lupusgreaterohio.org
Seeking Community After Lupus Diagnosis
Jen Oster started getting a strange rash on her legs while recovering from COVID. After multiple doctors appointments, prescribed rounds of medication and testing she was diagnosed with lupus. Jen sits down with Suzanne to share what she went through along the way and ultimately how it changed her life forever. Want to share your lupus story? Email our shows producer, Alex Acevedo, to book your ap
Tackling Lupus In Recovery
Valerie is a newly diagnosed lupus patient just beginning her journey. She shares her struggle to accept and understand her diagnosis while also in recovery from alcohol. Her story is a testament to strength, resilience, and perseverance. Want to share your lupus story? Email our shows producer, Alex Acevedo, to book your appearance! Alex@lupusgreaterohio.org
A Family Overcoming Lupus Together!
Melissa shares her incredible journey with lupus and how she, and her family, have managed to find strength together to overcome many hurdles along the way! Want to share your lupus story? Email our shows producer, Alex Acevedo, to book your appearance! Alex@lupusgreaterohio.org
Brittney refuses to let lupus win!
Brittney embodies the definition of a lupus warrior. 556 Days. 6 different hospitals. Countless surgeries. A lot of people may have given up. She was determined to come home. Listen to her incredible story! Want to share your lupus story? Email our shows producer, Alex Acevedo, to book your appearance! Alex@lupusgreaterohio.org
Lupus Patients & Caregivers Share Stories
The Greater Ohio Chapter held the "I Got It Right" Minority Retreat Saturday April 12. Patients and caregivers from across the region celebrated Minority Health Month by learning about Reiki, Meditation, Hair Care, Yoga, and Much More!After the program concluded Sarah, Laura, and Larissa sat down with Alex to share their thoughts on the program, their journey with lupus and the community
Finding Beauty in Having Lupus
Kim opens up to Suzanne about her journey with lupus including finding purpose, and how she uses beauty pageants as a platform for change!Want to share your lupus story? Email our shows producer, Alex Acevedo, to book your appearance! Alex@lupusgreaterohio.org
Hair Stylist Educates Clients About Lupus While Behind The Chair
Michelle Lamb joins Suzanne to talk about how she educates her community about various health related topics while behind the chair! As the owner of Hairport Beauty & Barber Studio in Cincinnati, Michelle saw a need for more informal education and awareness. During the height of the pandemic she saw an opportunity and seized it! Want to share your lupus story? Email our shows producer, Alex Ac
Lifestyle Changes To Help Manage Your Lupus
Suzanne sits down with Rick Delarosa, CTSP to discuss how lifestyle changes can aid lupus patients in their journey. Rick discusses healthy sleep habits, exercise, and the pillars of a healthy diet. Want to share your lupus story? Email our shows producer, Alex Acevedo, to book your appearance! Alex@lupusgreaterohio.orgAbout Rick Delarosa, CTSPblamelessbodyfitness.comWith over fifteen years as an
Episode 44 - The Year Ahead!
Suzanne & Alex sit down to layout what the chapter has planned in the coming year! The Cleveland & Columbus walk dates, our next educational program, support groups, our minority retreat and so much more!
New Yorker Moves To Ohio To Help Fight Lupus!
Join us for this winter break edition of My Lupus Living Room as we get to know Chris, the newest member of the LFA,GOC Team! Chris is our events assistant and moved from Long Island, New York to help us with educational programs, our walks and everything in between! Want to share your lupus story? Email our shows producer, Alex Acevedo, to book your appearance! Alex@lupusgreaterohio.org
Episode 42 - Roberta & Jessie - Mother and Daughter Fighting Together
Roberta and Jessie sat down with Suzanne just after the Cleveland Walk To End Lupus Now. This Mother/Daughter duo have an amazing story that we thought was fitting to share during the holiday season.
Want to share your lupus story? Email our shows producer, Alex Acevedo, to book your appearance! Alex@lupusgreaterohio.org
Episode 41 - Medicare Changes 2025 - Becky Hayward - OSHIIP
Suzanne is joined by Becky Hayward, The Outreach & Education Supervisor, from the Ohio Senior Health Insurance Information Program (OSHIIP). Becky discusses important changes coming to Medicare for 2025 that patients will want to consider during this open enrollment season!
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
Addressing Mental Health Challenges For Lupus Patients
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 AcevedoAlex@lupusgreaterohio.org440-717-0183
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 benef
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
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 lupuslegacy@interventionpoint.com
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 Alex@lupusgreaterohio.org
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.
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 li
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.
Alex@lupusgreaterohio.org
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!
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 alex@lupusgreaterohio.org
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!
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!
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.
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.
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.
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!
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 Little
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.
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.
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.
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!
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! &
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 reg
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 f
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!
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 wh
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 informatio
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 allison@lupusgreaterohio.org. We hope you enjoy this ep
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
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 lin
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
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
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 jou
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 informat
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 t
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 Sal
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
Episode 2 - Don't Be Blue, Talk it Through!
Mental health is so often overlooked in the treatment plan for chronic illnesses, yet it is so crucial to overall wellness. Our host, Suzanne, gets real about mental health while living with lupus. She is joined by Cari Kepic, a lupus and mental health advocate who is supporting her daughter through her lupus journey. The LFA, GOC is here to listen if you need someone to talk to. For more informat
Episode 1 - Ghosting the Support Group
So, you've finally reached a good place in your lupus journey. But where do you go from there? Suzanne chats with Aletha Acree about her path from newly diagnosed patient in a support group to LFA, GOC Community Outreach Coordinator. Years ago, when Aletha had finally gotten her lupus under control, she decided she didn’t need her support group anymore. She shares what brought her back to the chap
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