Lupus: The Expert Series – Details, episodes & analysis

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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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)

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

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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

• https://www.lupus.org/resources/lupus-remission
• https://www.lupus.org/resources/patient-physician-dialogue-tool
• https://www.lupus.org/resources/your-genes-and-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

• Check out LFA’s Policy Spotlight on Step Therapy
• Medications that treat lupus
• Learn how to self-advocate for yourself or a loved one here

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:

• https://www.lupus.org/resources/how-lupus-affects-the-bones
• https://www.lupus.org/resources/osteoporosis-management-strategies
• https://www.lupus.org/resources/how-lupus-affects-the-muscles-tendons-and-joints
• https://www.lupus.org/resources/exercising-with-lupus

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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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.

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