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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) -
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.
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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 cohortSUBSCRIBE to receive an email update when new episodes of The Expert Series are released.
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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:
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
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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 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 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:
What role do sex and gender play in lupus? Lupus facts and statistics What is self-advocacy Speak with a health educator Fenway Health - A health organization dedicated to helping LGBTQ+ communitiesSUBSCRIBE to receive an email update when new episodes of The Expert Series are released.
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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-assistanceSUBSCRIBE to receive an email update when new episodes of The Expert Series are released.
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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 -
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
Keep track your health information with Your lupus care file Financial assistance resource page Get the most from your doctor’s visit -
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)
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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
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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
SUBSCRIBE to receive an email update when new episodes of The Expert Series are released.
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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.SUBSCRIBE to receive an email update when new episodes of The Expert Series are released.
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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
Here is a resource and worksheet to help find support near you. If you want a list of program and services the Lupus Foundation of America provides, you can find information here.
Read about lupus and depression, and a coping with lupus strategies worksheet.
Depending on where you are in your lupus journey, consider signing up for Strategies to Embracing Living with Lupus Fearlessly, or SELF. This program is self-paced program and can guide someone to reach milestones that can help improve quality of life.
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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
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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.
Para obtener más información sobre recursos de asistencia financiera, visite: https://www.lupus.org/es/resources/recursos-de-asistencia-financiera
O aquí en inglés: https://www.lupus.org/resources/financial-assistance
For people with lupus, help may come in many ways – whether it’s through caregivers or organizations. While the Lupus Foundation of America doesn’t provide direct financial assistance, we have complied a resource to help people with lupus find the help they may need to keep up with the cost of their lupus care . Our Health Education Specialists Leticia Ocaña and Guadalupe Patiño share information in this resource for people with lupus, including from the Hispanic/Latino lupus community.
For more information of financial assistance resource, visit: https://www.lupus.org/es/resources/recursos-de-asistencia-financiera
Or here, in English: https://www.lupus.org/resources/financial-assistance
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