Lupus: The Expert Series

In this episode, we talk with Dr. Sasha Bernatsky, about lupus and cancer, if there’s a link between lupus and cancer, and a new abstract about cancer incidence and risk factors in a large SLE cohort. 

Dr. Bernatsky is a rheumatologist, a James McGill professor and a senior scientist in the Centre for Health Outcomes Research and Division of Clinical Epidemiology at the Research Institute of the McGill University Health Centre. Her expertise lies in using ‘big data’ from health services, linked to additional clinical sources of information.

In this episode of the Expert Series, we speak with Dr. Christie Bartels about stress and stress management for people with lupus. Dr. Bartels covers how to manage stress, resources to manage stress and the difference between stress symptoms and lupus symptoms. 

Dr. Bartels is Division Chief of Rheumatology at the University of Wisconsin School of Medicine and Public Health and Chair of the American College of Rheumatology (ACR) RISE Registry Health IT Committee. As a rheumatologist health services and implementation researcher, Bartels’ work aims to improve cardiovascular health and reduce disparities among patients with lupus and rheumatic diseases. 

For more resources on stress and stress management:

In this episode of The Expert Series, Dr. Tamar Rubinstein, a pediatric rheumatologist at the Children’s Hospital at Montefiore in New York, talks with us about how lupus affects teenagers, how they can cope with lupus, and how to communicate with health care providers as teens get older. 

Her research focuses on improving mental health and disease outcomes in youth with lupus and has been funded by the Lupus Foundation of America, the Rheumatology Research Foundation, the Childhood Arthritis and Rheumatology Research Alliance (CARRA)/ Arthritis Foundation, and the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the NIH.

Resources:

In this episode of The Expert Series, Dr. Anca Askanase, professor of medicine, the founder and director of Lupus Center and director of Rheumatology Clinical Trials at the Division of Rheumatology of the Columbia University Irving Medical Center in New York City, will be sharing about her role in the successful treatment of a catatonic woman who awakened after 20 years.

In this episode, we talk with Dr. Jillian Rose-Smith, vice president and chief equity officer at the Hospital for the Special Surgery, about lupus in the LGBTQ+ communities. We discuss what it means to have gender affirming care, how to protect yourself from implicit bias in the healthcare space and  how to get the support you need.

Review these resources to learn more:

In this month’s episode, we learn more about visible symptoms of lupus with Dr. May Choi. Dr. Choi will discuss the difference between visible and invisible symptoms, treatment options, and ways to cope with visible manifestations of lupus.

Dr. Choi is a rheumatologist, clinician scientist, and Assistant Professor at the Cumming School of Medicine, University of Calgary.

Resources

Dr. Cynthia Aranow explains the impact of invisible symptoms in this episode of The Expert Series. Learn the difference between a sign and symptom and how to discuss this topic with your health care team and loved ones.

Review these resources to learn more about this topic:

There is no set definition or timeframe for what counts as lupus remission. It’s no wonder lupus remission is a confusing topic!

This month, Dr. Ronald van Vollenhoven, director of Amsterdam Rheumatology Center in the Netherlands, shares his expertise about lupus remission and inactive lupus and what it means for lupus warriors.

Learn more about lupus remission on our National Resource Center on Lupus

In this episode of The Expert Series, we explore the topic of Step Therapy and access to medications. LFA’s Health Education Specialist and Manager Ashley Holden will explain what Step Therapy is and how it can affect people with lupus.

Related resources

Inflammation from lupus and treatments can affect a person’s bone density, which makes it easier for someone with lupus to break a bone. Dr. Ummara Shah, associate professor in the department of medicine at University of Rochester, discusses why it’s important for people with lupus to care about their bone health.

Dr. Shah also leads clinical trials in lupus and is involved in education of lupus patients at the University of Rochester.

More resources on how to manage bone health:

You may have heard the terms health disparities or social determinants of health being used in conversation, but weren’t quite sure how they apply to people with lupus. If so, this is your time to listen.

We’re talking with LFA’s Research Director Dr. Joy Buie about health disparities and social determinants of health and how it can affect people with lupus.

Here is some important information

La discusión de este episodio se impartió en español

Lupe y Lety, especialistas en educación para la salud de la Fundación de Lupus de América (LFA, por sus siglas en inglés), están de vuelta en un nuevo episodio respondiendo preguntas frecuentes sobre el lupus sometidas al equipo de educación para la salud.

In this episode, we focus on eyes and how lupus can affect vision. Dr. Michelle Petri, founder and director of Johns Hopkins Lupus Center, discusses the importance of maintaining eye health when you have lupus, and what to take notice of depending on prescribed medications.

Clinical trials make new and better treatments for lupus possible. In this episode of The Expert Series, we sit down and talk with Stephanie Slan, director of IMPACT+ (Improving Minority Participation and Awareness in Clinical Trials) at the Lupus Foundation of America about clinical trial participation. Stephanie also debunks some myths about clinical trials might keep people from wanting to participate.

It’s important for people with lupus to consider participating in these trials to further the advancement of lupus medicines and treatment. This episode breaks down eligibility criteria, what happens during a clinical trial, and what happens with your information after a trial.

Listen to learn more

The Expert Series is happy to have Dr. Bonnie Bermas on our episode about fertility and reproductive health.

Dr. Bermas is an internal medicine professor at UT Southwestern Medical Center focusing on rheumatology disorders. She was the Clinical Director of the Lupus Center and co-director of the Program in pregnancy and rheumatic diseases at Brigham and Women’s  and Harvard Medical School.

Her research interests include pregnancy and rheumatic diseases, systemic lupus erythematosus (SLE) and antiphospholipid syndrome (APS), and rheumatic immune checkpoint inhibitor adverse events.

Below are resources from the National Resource Center on Lupus related to this episode

In this month’s episode, we talk about self-care/self-management with Dr. May Choi. Dr. Choi is a rheumatologist, clinician scientist, and Assistant Professor at the Cumming School of Medicine, University of Calgary.

She has a background and training that include Masters of Public Health in Epidemiology at Harvard University and a lupus fellowship. Dr. Choi is also the Associate Director of MitogenDx Laboratory for novel autoantibody and biomarker testing for autoimmune diseases and the Associate Director of Research for the University of Calgary Lupus Centre of Excellence.

Resources

In this month’s episode, we speak with Dr. Jane Salmon about Antiphospholipid Syndrome, or APS. Dr. Salmon is a Collette Kean Research Professor and the director of the Lupus and APS Center of Excellence at the Hospital for Special Surgery.

Dr. Salmon shares her insight on APS how it can affect people with lupus, treatments, and more. Tune in to learn more.

This episode was recorded in Spanish. Este podcast fue grabado en español.

En este episodio, nuestras especialistas en educación para la salud, Leticia Ocaña, MPH, CHES® y Guadalupe Patiño, MPH, hablan sobre los recursos financieros que pueden estar disponibles para las personas con lupus de la comunidad hispana/latina. Los recursos que comparten incluye información que se encuentra en nuestro nuevo artículo que se enfoca en brindar ayuda a la comunidad de lupus y dónde buscarla.

In this episode of The Expert Series, we welcome Dr. Murray Urowitz, a senior staff rheumatologist at the Toronto Western Hospital and Senior Scientist at the Krembil Research Institute and Schroeder Arthritis Institute. Dr. Urowitz helps us continue the conversation on lupus and heart health. We discuss the difference between coronary artery disease and cardiovascular disease for lupus patients, how these diseases present in both men and women, and more.

In this episode of The Expert Series, we are focusing on medication management. LFA talks with Dr. Marcia Mueting, CEO of Nebraska Pharmacists Association, about the importance of connecting with your local pharmacists, what questions to ask, and what to do if you experience side effects from your lupus medications. Dr. Mueting also worked as staff pharmacist, pharmacy manager in a community practice, and helps support her husband, who is a lupus warrior.

For information on lupus medications, check out these resources:

In this episode of The Expert Series, we talk with Dr. Anca Askanase, founder and clinical director of Columbia University’s Lupus Center, about winter wellness. We discuss how to stay healthy during cold and flu season, the importance of getting a flu shot every year, and more.

To learn more about flu and vaccines for people with lupus, check out our resources on our Resource Center:

In honor of National Caregivers Month, we speak with Grace Whiting, president and CEO of The National Alliance for Caregiving, on why we should give back to those who take care of us. In this episode we discuss the caregiver role, tips to stay healthy, resources, and more.

In this episode of The Expert Series, LFA’s Senior Communication Strategist Duane Peters talks with Melanie Betz of University of Chicago. Betz, a member of the American Kidney Fund dietician advisory group, addresses the role of diet for people with Lupus Nephritis and kidney-friendly recipes.

Esta discusión se lleva a cabo en español. En este episodio de la Serie de Expertos la Gerente de Educación para la Salud y Alcance Hispano, Leticia Ocaña, habla con la Dra. Cristina Drenkard, Profesora Asociada de Medicina de la Universidad Emory en Atlanta, Georgia, sobre los mitos y realidades comunes del lupus que rodean al lupus. 

In this episode of The Expert Series, Dr. Diane Kamen, Associate Professor of Medicine at the Medical University of South Carolina, Division of Rheumatology, will be sharing updates regarding research for treatments in lupus. She highlights the history of autoimmunity research, stem cell research and newly approved treatments for lupus.

The Lupus Foundation of America Health Education Specialists have had increased calls and emails from people with lupus, with questions about safely returning to work. We know that this year, is a very unique one for getting back to work with the COVID-19 pandemic. But we also know that working with lupus is a very important topics for most people with lupus and one we want to make sure we cover.

Please find the links to important resources discussed in this episode:

It’s Men’s Health Month and we want to discuss how lupus affects men.

In this episode of The Expert Series, Men’s Health and Special Considerations with Lupus, we answer some important questions about men’s health with Dr. Niewold, Director of the Colton Center for Autoimmunity and Judith and Stewart Colton Professor of Medicine and Pathology at New York University Grossman School of Medicine.

Getting an early and accurate lupus diagnosis is critical to preventing long-term consequences of the disease.

In this episode of The Expert Series, Could It Be Lupus? we answer some important questions about labs and diagnostic assessments for lupus diagnosis with Dr. Adegbenga Bankole from Carillion Clinic in Roanoke, Virginia.

In this episode of The Expert Series, we discuss Improving Health Visits for People with Lupus with Jillian Rose. Jillian Rose is Assistant Vice President of Community Engagement, Diversity, Research at the Hospital for Special Surgery with a Master’s in Social Work, a Master’s in Public Health and Doctorate of Education from Columbia University in New York. She is dedicated to health equality for rheumatology and orthopedic care and today, as we celebrate Minority Health Month, we share her knowledge about implicit bias and how we can work to improve health visits for people with lupus.

In this episode of The Expert Series, we discuss Managing Your Journey with Lupus Nephritis with Wendy Rodgers. Wendy is the Senior Manager for Community Outreach and Engagement for the Lupus Foundation of America and lupus warrior. With a background in science and education, and has lived with lupus for 21 years (and counting), she provides helpful insights into managing your lupus nephritis and how to find resources along the way.

In this episode of The Expert Series, we discuss Top Questions about Skin and Hair with Fotios Kompouras, MD. Dr. Kompouras is an Assistant Professor of Medicine and Director of the Yale Lupus Program in Connecticut. He attended St. George's University School of Medicine and worked closely with Lupus Foundation of America’s Acting Medical Director, Dr. Susan Manzi, investing novel therapeutics for lupus at the University of Pittsburgh and Allegheny Clinic before moving to Yale. He has assisted in important clinical research over the course of his career that has contributed to the treatments for lupus and has developed a cohort of lupus patients for novel lupus research. He also has developed the Rheumatology/Dermatology clinic with Sarika Rama Chandra at Yale.

In this episode of The Expert Series, we discuss Lupus & Physical Activity with Hazel L. Breland PhD, FAOTA, OTR/L. Dr. Breland is an Associate Professor of Occupational Therapy at the Medical University of South Carolina, doctoral capstone coordinator, and past president of the Association of Rheumatology Professionals, the interprofessional division of the American College of Rheumatology. Her academic areas of focus include diversity, equity, and inclusion; interprofessional education, community engagement, occupational therapy clinical education; and, patient-centered interventions for chronic conditions

2020 was an unprecedented year. The lupus community is strong and we helped each other through this year by sharing our wisdom and compassion. In this episode, we asked both experts in the field as well as people with lupus for advice as we approach 2021.

In this episode of The Expert Series, we discuss Trust and Participation in Research with Dr. Owen Garrick. Dr. Garrick is the President and CEO of Bridge Clinical Research, a global clinical research and health communications firm focused on drug development, scientific advancement and patient engagement. He has helped launch multiple collaborative efforts in advancing precision medicine research and serves as an advisor to the Stanford Precision Health for Ethnic and Racial Equity Center (SPHERE). In this interview, Dr. Garrick shares more information about precision medicine, the importance of diversity in clinical trials and what participation in a clinical trial entails.

In this episode of The Expert Series, we discuss The Importance of Support with Lupus Foundation of America staff: Wendy, our Community Outreach and Engagement Manager, and Lauren, our Health Education Nurse Manager. Wendy and Lauren share more information about types of support, support groups, and helpful resources for those looking to build their support system.

In this episode of The Expert Series, we discuss Kidney Health and Lupus with Dr. Brad Rovin, Nephrologist at Ohio State University Wexner Medical Center. Dr. Rovin explains what to expect from a lupus diagnosis, lifestyle considerations for healthy living, and what exciting new treatments are on the horizon for people with lupus nephritis.

In this episode of The Expert Series, The Impact of Racial Trauma on Mental Health, America Paredes from Mental Health America discusses mental health in the Black, Indigenous and People of Color (BIPOC) community as well as resources to help cope.

 In this episode of The Expert Series, Reproductive Health and Lupus, Dr. Jane Salmon shares information about reproductive health, antiphospholipid syndrome (APS), challenges with pregnancy with lupus and tips on how to prepare for a having safe pregnancy.

In this episode of The Expert Series, Telehealth and Lupus, Dr. Donald Thomas shares information about telehealth and tips on how to prepare for a virtual visit with your doctor.

In this episode of The Expert Series, Kathryn Wierenga, one of the 2019 recipients of the Lupus Foundation of America’s Gina M. Finzi Memorial Student Summer Fellowship Award, shares more information about the Importance of Fatty Acids and People with Lupus.

The Expert Series by the Lupus Foundation of America is an educational podcast series featuring empowering conversations with leading lupus experts with a focus on helping you live well with lupus.

Each month, lupus experts will offer invaluable insight on a variety of important topics, providing you with the knowledge you need to better manage the disease.