Lupus: The Expert Series

En este episodio de La Serie de Expertos, el pódcast de la Fundación de Lupus de América, la Dra. Olga Kromo analiza las complejidades del lupus y su impacto en el manejo del dolor. Aborda los distintos tipos de dolor, las opciones de tratamiento y la carga emocional que conlleva el dolor crónico. Destaca la importancia de comprender el origen del dolor, mantener una comunicación clara con los profesionales de la salud y contar con una atención integral. Asimismo, resalta la relación entre el dolor y la fatiga, el papel de la alimentación y las investigaciones futuras que ofrecen tratamientos prometedores.This episode is also available in English. Listen here: https://open.spotify.com/episode/0bJcmfMlrSJno9EtoYbBYWRegístrese para recibir correos electrónicos de la Fundación de Lupus de América (LFA) cuando se publiquen nuevos episodios: https://support.lupus.org/site/SPageNavigator/email_subscribe_expert_series.html (en inglés)Conclusiones:El lupus es una enfermedad compleja que causa inflamación y diferentes tipos de dolor.El dolor crónico y la fatiga pueden afectar de manera significativa la vida diaria, el bienestar emocional y la salud mental.El manejo del dolor a menudo requiere medicamentos, cambios en el estilo de vida y técnicas de reducción del estrés.La alimentación desempeña un papel importante en el manejo de los síntomas del lupus.La comunicación clara con los profesionales de la salud y el seguimiento de los síntomas son fundamentales para una atención eficaz.Las redes de apoyo, la educación y la investigación en curso ofrecen esperanza de tratamientos mejorados y futuros avances.

In this episode of the Lupus Foundation of America's The Expert Series podcast, Dr. Olga Kromo discusses the complexities of lupus and its impact on pain management. She covers types of pain, treatment options, and the emotional toll of chronic pain. She emphasizes understanding the source of pain, clear communication with providers, and comprehensive care. She also highlights the link between pain and fatigue, the role of diet, and future research with promising treatments.Este episodio también está disponible en español. Escúchelo aquí: https://open.spotify.com/episode/3cC5lbZcrrMkTVV31xkejCSign up to receive emails from the Lupus Foundation of America (LFA) when new episodes are published: https://support.lupus.org/site/SPageNavigator/email_subscribe_expert_series.htmlEpisode Takeaways:Lupus is a complex disease that causes inflammation and different types of pain.Chronic pain and fatigue can greatly affect daily life, emotional well-being, and mental health.Pain management often requires medications, lifestyle changes, and stress reduction techniques.Diet plays an important role in managing lupus symptoms.Clear communication with healthcare providers and tracking symptoms are key to effective care.Support networks, education, and ongoing research offer hope for improved treatments and future breakthroughs.

In this episode of the Lupus Foundation of America's The Expert Series podcast, we focus on the unique challenges faced by men with lupus, a group that often experiences delayed diagnosis and is impacted by widespread misconceptions. Dr. Lisa Sammaritano shares how lupus symptoms can differ between men and women, and how the disease can affect mental health, identity, and quality of life. We also discuss reproductive health concerns and the evolving landscape of lupus treatment. For men who are newly diagnosed, Dr. Sammaritano offers practical guidance and emphasizes the importance of self-advocacy, education, and seeking support throughout the lupus journey.Sign up to receive emails from the Lupus Foundation of America (LFA) when new episodes are published.Episode Takeaways:Lupus in men is often overlooked, leading to delayed diagnosis and misunderstandings about the disease.Symptoms and disease progression can differ in men, making personalized care especially important.Self-advocacy and education are key to managing lupus and navigating the healthcare system.Mental health and reproductive health concerns are important but often under-addressed aspects of living with lupus.Support from peers, family, and friends plays a vital role in coping and improving quality of life.Related Resources:Ask a Lupus Health Educator (LFA) Find Support Near You (LFA) National Resource Center on Lupus (LFA) American College of Rheumatology (ACR) Systemic lupus erythematosus and male reproductive health: A systematic review and meta-analysis Impact of sex disparities on the clinical manifestations in patients with systemic lupus erythematosus

In this episode of the Lupus Foundation of America's The Expert Series podcast, we explore the intersection of menopause and lupus, highlighting the unique challenges faced by women with lupus during this significant life transition. Dr. Mehret Birru Talabi explains the stages of menopause, its effects on lupus symptoms, and the importance of individualized care. We also cover hormone replacement therapy, lifestyle factors, and the necessity of self-advocacy in managing health during menopause. And although we know it isn’t easy, we also talk about how important it is for women to prioritize their health and seek support from their health care team.Sign up to receive emails from the Lupus Foundation of America (LFA) when new episodes are published.Episode Takeaways:Menopause is a significant transition in women's lives. Because most people with lupus are women, most people with lupus will experience this transition.Estrogen plays an important role in autoimmune diseases like lupus and fluctuating estrogen levels during menopause can cause both increases and decreases in disease activity.Hormone replacement therapy can be an option for women with lupus who are having difficulty managing the symptoms of menopause. There is no one size fits all approach to lupus or menopause and women should discuss all of their options with their health care team.Lifestyle factors such as diet and exercise are vital in managing menopause symptoms and lupus. Even small changes can lead to positive results.Quality of life matters and women with lupus don’t have to face difficult symptoms of menopause without help. Learning and practicing self-advocacy is essential for women navigating menopause and lupus.Related Resources:Grown Women Talk: Your Guide to Getting and Staying Healthy by Sharon MaloneAsk a Lupus Health Educator (LFA)Find Support Near You (LFA)National Resource Center on Lupus (LFA)The Expert Series: Lupus and Antiphospholipid Syndrome (LFA)The Expert Series: Planning for Pregnancy With Lupus (LFA)

This episode explores the complex relationship between lupus and fibromyalgia, focusing on definitions, symptoms, overlapping conditions, treatment approaches, mental health implications, cultural influences, lifestyle factors, diagnostic tools, and the importance of patient advocacy. Experts Drs. Peter Izmirly and Kelly Corbitt provide insights into the challenges faced by patients with both conditions and discuss the need for better understanding and treatment options. Sign up to receive emails from the Lupus Foundation of America (LFA) when new episodes are published. Related Resources: Strategies for Managing Pain (LFA) Staying Active When You Have Lupus (LFA) Ask a Lupus Health Educator (LFA) FMAware.org (National Fibromyalgia Association resource site mentioned by Dr. Corbitt)

Drs. Ashira Blazer and Denise Kimbrough discuss the recent removal of the African American/Black race coefficient from the Kidney Donor Profile Index (KDPI) by the Organ Procurement and Transplantation Network (OPTN). Learn about the implications for lupus patients with kidney disease and the potential impacts on health equity. Episode Takeaways: Lupus-related kidney disease (lupus nephritis) disproportionately affects African American/Black, Hispanic, Indigenous, South Asian and Latino/a populations, who face longer transplant wait times due to systemic inequities and social determinants of health. Biases in medical algorithms, such as race-based estimated glomerular filtration rate (eGFR) calculations, can harm patient outcomes. Recent removal of race from eGFR calculations could potentially improve access to transplants for communities where previous opportunities for transplantation were significantly lower. Enhancing education and awareness related to kidney health is essential for addressing these health disparities and improving outcomes. Sign up to receive emails from the Lupus Foundation of America (LFA) when new episodes are published. Related Resources: New Policy Will Remove Race, Improve Equity in Transplantation (National Kidney Foundation) Kidney transplant for lupus: Your essential questions answered (LFA) Lupus Nephritis Information Center (LFA) Lupus and the Kidneys (LFA) What is lupus nephritis? (LFA)

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: Find out more about lupus and teens School survival guide for teens with lupus Helping teens learn to cope with lupus SELF app, for people 18+ in the U.S. Mentioned resources: Take a pain check, a chronic disease podcast meant to support youth with rheumatic diseases

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. Read more about lupus facts and statistics Learn how doctors diagnose lupus FAQs about participating in clinical trials Help expand lupus research through RAY (Research Accelerated by You) Read the mentioned abstract: Updated analyses  of cancer incidence and risk factors in a large international SLE cohort SUBSCRIBE to receive an email update when new episodes of The Expert Series are released.

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: Managing stress when you have lupus Managing mental health with lupus Find Support Near You Other resources mentioned in the episode SELF Insight Timer Arthritis Foundation’s Walk with Ease program

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. Read the article on April’s case and others on the Washington Post, How autoimmune disease can attack the brain, cause psychiatric symptoms Lupus resources: Coping with the cognitive symptoms of lupus What is inflammation? How lupus affects the body

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 Check out our previous episode about invisible symptoms with Dr. Cynthia Aranow Use this sheet to keep track of your lupus symptoms Learn how lupus affects the body

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: https://www.lupus.org/resources/understanding-the-invisible-impact-of-lupus https://www.lupus.org/resources/ten-things-to-tell-your-friends-about-lupus https://www.lupus.org/resources/learn-ways-to-better-manage-your-lupus https://www.lupus.org/resources/financial-assistance SUBSCRIBE to receive an email update when new episodes of The Expert Series are released.

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 Read about Lupus and women’s reproductive health Read how six men are living with lupus Learn more to  understand the role of how sex and gender play in lupus For more information on medication, read about Medications used to treat lupus. SUBSCRIBE to receive an email update when new episodes of The Expert Series are released.

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. For more information on APS, read here Learn more about lupus and pregnancy Learn more on how smoking can affect people with lupus

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. Find out more information on heart health and lupus on our National Resource Center on Lupus. | En Español You may also find our referenced heart episode with Dr. Jim Oates, here SUBSCRIBE to receive an email update when new episodes of The Expert Series are released.

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: Treating lupus: A guide Understanding your lupus medications Treatments being studied for lupus To learn more on how lupus affects the body, visit: https://www.lupus.org/resources/how-lupus-affects-the-body SUBSCRIBE to receive an email update when new episodes of The Expert Series are released.

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: Get your annual flu shot Lupus and Vaccines Be sure to also check out our blog discussing how to stay safe and stress-free this holiday season.

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. For more information on caregiving, check out our dedicated page for caregivers.

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.  Si necesita más información y apoyo, consulte nuestro paquete informativo sobre el lupus aquí. Información adicional está disponible en español. Visite: lupus.org/es/resources This discussion is conducted in Spanish. In this episode of The Expert Series, Health Education Manager for Hispanic Outreach Leticia Ocaña speaks with Dr. Cristina Drenkard, Associated Professor of Medicine at the Emory University in Atlanta, Georgia about the common lupus myths and realities surrounding lupus.  If you need more information and support, please take a look at our lupus information packet here. More resources are available in Spanish, visit: Lupus.org/es/resources SUBSCRIBE to receive an e-mail update when new episodes of The Expert Series are released.

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. SUBSCRIBE HERE to receive an e-mail updates when new episodes of The Expert Series are released. About the Presenter Dr. Donald Thomas teaches at the Walter Reed National Military Medical Center as an Associate Professor of Clinical Medicine of the Uniformed Services University of the Health Sciences, a practicing rheumatologist in Greenbelt, Maryland and author of the” Lupus Encyclopedia: A Comprehensive Guide for Patients and Families.”