In this episode of the Lupus Foundation of America's The Expert Series podcast, Dr. Amit Saxena dives into why vaccines are such a powerful tool for people living with lupus. Since lupus and some of its treatments can weaken the immune system, getting the right vaccines can make a big difference in staying healthy and preventing serious infections. Dr. Saxena also breaks down which vaccines are most important and how lupus medications can impact their effectiveness.
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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/0bJcmfMlrSJno9EtoYbBYW
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Conclusiones:
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/3cC5lbZcrrMkTVV31xkejC
Sign 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.html
Episode Takeaways:
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.
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Related Resources:
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.
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:
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.
Related Resources:
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.
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Related Resources:
March is Kidney Month! Join us for a conversation with Dr. Brad Rovin, an expert in autoimmune kidney disease, where we talk about lupus nephritis and kidney health for people with lupus.
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
Help expand lupus research through RAY (Research Accelerated by You)
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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:
Other resources mentioned in the episode
Insight Timer
Arthritis Foundation’s Walk with Ease program
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:
Mentioned 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.
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:
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:
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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:
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.
Para enviar su propia pregunta a los especialistas en educación de la salud, llena este formulario aquí
Para leer más de las respuestas del blog de las especialistas en educación de la salud hag clic en el enlace, en inglés o en español
Para obtener más información sobre el lupus, visite el NRCL (NRCL en español)
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This episode discussion is conducted in Spanish
Lupus Foundation of America’s Health Education Specialists, Lupe and Lety, are back in a new episode answering frequently asked lupus questions sent to the health education team.
To submit your own question to Health Education Specialists, fill out this form here
To read more from Answers from the Health Education Specialists blog, in English or en Espanol
To learn more about lupus, visit the NRCL (NRCL en Espanol)
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.
To learn more about lupus and the eyes, review a slideshow here
Related:
To see how lupus affects other parts of the body, check out our resources here
Here’s how medications used to treat lupus can affect you, read more here
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
To learn more about clinical trials, read more about participating in clinical trials here or about frequently asked questions here
If you are interested in participating in research, visit: Lupus.org/RAY
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