Lupus: The Expert Series

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

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Episode 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 Malone
• Ask 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.

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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.

Episode Takeaways:

Sign up to receive emails from the Lupus Foundation of America (LFA) when new episodes are published.

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.

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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

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.

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: