How Lupus Affects Hispanic and Lantinx Communities
- rosetakelli
- Sep 17, 2021
- 7 min read
Honrando el Mes de la Herencia Hispana
Cómo las comunidades hispanas y latinas con lupus
Introduction:
In honor of Hispanic Heritage Month, More Than Lupus is continuing our plan of action to shine a light on the underrepresented Hispanic and Latinx communities, the history of health disparities, Hispanic and Latinx heterogeneity, clinical trial challenges, social bias, stigmas, and more.
En honor al Mes de la Herencia Hispana, More Than Lupus continúa con nuestro plan de acción para arrojar luz sobre las comunidades hispanas y latinx subrepresentadas, la historia de las disparidades en la salud, la heterogeneidad hispana y latina, los desafíos de los ensayos clínicos, el sesgo social , estigmas y más.
As we have stated before here at MTL, minority populations are more affected by lupus and experience significantly higher disease manifestations, organ involvement, and endure elevated instances of medical gaslighting, which can lead to diagnostic and treatment delays and higher mortality rates.
Como hemos dicho antes aquí en MTL, las poblaciones minoritarias se ven más afectadas por el lupus y experimentan manifestaciones de la enfermedad significativamente más altas, afectación de órganos y soportan casos elevados de iluminación con gas médico, lo que puede provocar retrasos en el diagnóstico y el tratamiento y tasas de mortalidad más altas.
On average, people of Hispanic/Latinx ethnicity die 9.5 years earlier than people with lupus in any other ethnic or racial group, including white populations.
En promedio, las personas de etnia hispana / latinx mueren 9.5 años antes que las personas con lupus de cualquier otro grupo étnico o racial, incluidas las poblaciones blancas.
One of the most burdensome complications of lupus in Hispanic and Latinx patients is kidney disease. In a study collaboration between NYU and the CDC, called the Manhattan Lupus Surveillance Program (MLSP) findings showed that 49.4 percent of Hispanics had kidney disease compared to 25.4 percent among white populations. The findings echo what us minority patient populations have been saying all along - that we MUST improve access to care and diagnostics among minority demographics.
Una de las complicaciones más onerosas del lupus en los pacientes hispanos y latinos es larenal enfermedad. En un estudio de colaboración entre la NYU y los CDC, denominado Programa de Vigilancia del Lupus de Manhattan (MLSP), los resultados mostraron que el 49,4 por ciento de los hispanos tenían enfermedad renal en comparación con el 25,4 por ciento entre las poblaciones blancas. Los hallazgos se hacen eco de lo que las poblaciones minoritarias de pacientes hemos estado diciendo todo el tiempo: que DEBEMOS mejorar el acceso a la atención y el diagnóstico entre las minorías demográficas.
Principle investigator Hilary Parton, MPH went on to state, "While this project highlights the disparities in lupus rates among Hispanic and Asian women, there is more work to do to determine the cause..."
In another population-based study of SLE patients (which specifically looked at patients in highly populated San Francisco County) discovered that among Hispanic/Latina females with SLE mortality was six times higher than that of their white counterparts in the general population.
En otro estudio poblacional de pacientes con LES (que analizó específicamente a pacientes en el condado de San Francisco densamente poblado) descubrió que entre las mujeres hispanas / latinas con LES la mortalidad era seis veces mayor que la de sus contrapartes blancas en la población general.
The Challenges:
The statistics regarding the severity of lupus in Hispanic and Latinx communities are alarming. Unfortunately, it’s unclear whether mortality rates are higher in these populations due to genetic risk factors, differences in lupus care or other risk variables or disparities. “We need to do much more to address these unacceptable health disparities in lupus,” says Karen Costenbader, MD, MPH, professor of rheumatology at Harvard University Medical School, and chair of the Medical-Scientific Advisory Council at LFA. “We need more dedicated programs working to improve outcomes in lupus, and we need to work on many different fronts at once.” (source LFA)
Las estadísticas sobre la gravedad del lupus en las comunidades hispanas y latinx son alarmantes. Desafortunadamente, no está claro si las tasas de mortalidad son más altas en estas poblaciones debido a factores de riesgo genéticos, diferencias en la atención del lupus u otras variables de riesgo o disparidades. “Necesitamos hacer mucho más para abordar estas disparidades de salud inaceptables en el lupus”, dice Karen Costenbader, MD, MPH, profesora de reumatología en la Facultad de Medicina de la Universidad de Harvard y presidenta del Consejo Asesor Médico-Científico en LFA. "Necesitamos programas más dedicados que trabajen para mejorar los resultados en el lupus, y debemos trabajar en muchos frentes diferentes a la vez". (fuente LFA)
Another challenge is that patients of Hispanic or Latinx ancestry may be non-English speakers - which can lead to problems attaining lupus materials that are easily understood or culturally relevant. Language barriers may also lead to higher levels of medical gaslighting, where a doctor may assume certain stigmas and “curb qualify” a patient based on his or her race, ethnicity, weight, etc. without doing their due diligence, research, or taking the time to listen and translate the patient's needs.
Otro desafío es que los pacientes de ascendencia hispana o latinx pueden no hablar inglés, lo que puede generar problemas para obtener materiales sobre el lupus que sean fácilmente comprensibles o culturalmente relevantes. Las barreras del idioma también pueden conducir a niveles más altos de iluminación médica con gas, donde un médico puede asumir ciertos estigmas y "frenar la calificación" de un paciente en función de su raza, origen étnico, peso, etc. sin hacer su debida diligencia, investigación o tomar la tiempo para escuchar y traducir las necesidades del paciente.
Bad experiences, historical mistreatment, and other biases towards Latin Americans can eventually lead to a distrust of Western medicine and an avoidance of modern medical institutions all together.
Las malas experiencias, el maltrato histórico y otros prejuicios hacia los latinoamericanos pueden eventualmente llevar a una desconfianza en la medicina occidental y a evitar por completo las instituciones médicas modernas.
As a person of Hispanic and Indigenous ancestry, who is “white appearing” and speaks English, I have had the unique perspective of both identifying the privilege I carry because of those things, and being mindful and fighting for those who share the same heritage as me, that aren’t treated with the same regard because their skin tone is darker and they don’t speak English. This drives me to continue to never to be complacent, but always advocate for those (and by those I mean my people, minority populations) that are treated “less than” simply because they are “less white.”
Como persona de ascendencia hispana e independiente, que tiene "apariencia blanca" y habla inglés, he tenido la perspectiva única de identificar el privilegio que tengo debido a esas cosas, y ser consciente y luchar por aquellos que comparten la misma herencia que yo, que no se tratan con la misma consideración porque su tono de piel es más oscuro y no hablan inglés. Esto me impulsa a seguir nunca siendo complaciente, pero siempre abogando por aquellos (y por aquellos me refiero a mi gente, las poblaciones minoritarias) que son tratados "menos que" simplemente porque son "menos blancos."
The impact of racism and oppression increases numerous risk factors for illness and injury, including reduced access to fresh nutritious foods, fewer opportunities for physical activity, greater exposure to environmental toxins, and substandard housing and neighborhood conditions
- HHS, T.H.R.I.V.E.
Community-Based Solutions:
How are we going to make any shifts to a better and equitable future for Hispanic and Latinx populations? One idea is to examine how a community-based approach to lupus education and awareness may help improve doctor/patient dialogues and amplify the patient voice in Hispanic and other communities of color.
¿Cómo vamos a hacer cambios hacia un futuro mejor y más equitativo para las poblaciones hispanas y latinas? Una idea es examinar cómo un enfoque comunitario para la educación y la concientización sobre el lupus puede ayudar a mejorar los diálogos entre médicos y pacientes y amplificar la voz del paciente en las comunidades hispanas y otras comunidades de color.
One endeavor to ignite this process was the creation of the The Facebook page "Hablemos de Lupus" to address a lack of resources for Latin Americans living with lupus. This ever-growing page (85,000 followers) provides a unique opportunity to understand more about Latin Americans with lupus through community connections. By providing easy to follow Spanish health literature, the page helps patients understand and perceive aspects of their disease that may affect their self-management practices and, ultimately, impact their long-term outcomes.
Un esfuerzo para iniciar este proceso fue la creación de la página de Facebook "Hablemos de Lupus" para abordar la falta de recursos para los latinoamericanos que viven con lupus. Esta página en constante crecimiento (85.000 seguidores) brinda una oportunidad única para comprender más sobre los latinoamericanos con lupus a través de conexiones comunitarias. Al proporcionar literatura de salud en español fácil de seguir, la página ayuda a los pacientes a comprender y percibir aspectos de su enfermedad que pueden afectar sus prácticas de autocuidado y, en última instancia, afectar sus resultados a largo plazo.
Another fantastic community-based platform is Charla de Lupus (Lupus Chat)® . This is a national program through Hospital for Special Surgery that offers Hispanic and Latinx patients with lupus and their families support and education in Spanish and English.
Otra fantástica plataforma comunitaria es Charla de Lupus (Lupus Chat) ® . Este es un programa nacional a través del Hospital for Special Surgery que ofrece a los pacientes hispanos y latinos con lupus y sus familias apoyo y educación en español e inglés.
Additionally, they offer:
Charla Line, a toll free national support and education helpline, which screens and matches callers with peers for ongoing telephone support and education.
Onsite Peer Support Outreach at four hospital-based clinics.
Charla Teen, Young Adult and Parent Support Groups include educational forums and special events.
Community, Professional Presentations and Health Fairs as well as organizational and federal collaborations
"For Inquiring Teens with Lupus: Our Thoughts, Issues and Concerns," an award-winning publication written and illustrated by a young Charla peer volunteer
Además, ofrecen:
Charla Line, una línea nacional gratuita de ayuda educativa y de apoyo, que filtra y conecta a las personas que llaman con sus compañeros para recibir apoyo telefónico y educación continuos.
Alcance de apoyo entre pares en el lugar en cuatro clínicas hospitalarias.
Los grupos de apoyo para adolescentes, adultos jóvenes y padres de Charla incluyen foros educativos y eventos especiales.
Presentaciones comunitarias, profesionales y ferias de salud , así como colaboraciones organizativas y federales
"For Inquiring Teens with Lupus: Our Thoughts, Issues and Concerns", una publicación galardonada escrita e ilustrada por un joven voluntario de Charla.
Lastly, our book “My Special Butterfly” is available in Spanish Mi Mariposa Especial! Is a children's book that explains lupus to the little loved ones in your life in a way that makes sense and is not scary.
Por último, nuestro libro "My Special Butterfly ”está disponible en español ¡ Mi Mariposa Especial! Es un libro para niños que explica el lupus a los pequeños seres queridos en su vida de una manera que tiene sentido y no da miedo.
Written By/Escrito por:
Kelli (Casas) Roseta
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2021.
Source:
September 2021
Here’s what I found out about ABCD Index Journals / ABCD Index, what it is, how it works, and what to watch out for. If you want, I can also pull up a list of some “good/legitimate” ABCD journals in your field.
What is ABCD Index (Academic Business Current Dcaata)
ABCD Index is a platform (“Academic Business Current Data”) that gives information about journals: publisher, open/paid access, indexing status, journal score, etc.
It allows journals to register in its database; then researchers/authors can search and filter journals by various criteria (country, subject area, whether they charge a fee, open/paid, etc.).
It has a program called RAMP (“Research Article Medium of Publication”) which helps authors find journals to publish in, including ABCD-verified ones.
The Modern Struggle of Online Learning: Exploring the “Someone Take My Class Online” Phenomenon
Introduction
The rapid advancement of technology someone take my class online has revolutionized nearly every aspect of human life, and education is no exception. The digital transformation of learning has opened doors to millions of students across the world, making it possible to earn degrees, certifications, and professional qualifications without ever stepping foot in a traditional classroom. Online education offers flexibility, accessibility, and convenience — qualities that appeal to students managing multiple responsibilities. However, with this flexibility comes immense pressure. Balancing coursework, employment, and personal obligations can be exhausting, leading many students to a point of frustration where they begin searching for “someone take my class online.”
Take My Class for Me Online – Redefining Academic Support in the Digital Learning Era
Education has undergone a tremendous take my class for me online transformation over the past two decades. What was once confined to the walls of traditional classrooms has now expanded into the digital realm, where students can pursue degrees, certifications, and specialized training entirely online. This shift has brought unparalleled accessibility and convenience, allowing millions of learners worldwide to study at their own pace and from any location. However, with these advantages come significant challenges—balancing professional duties, personal responsibilities, and academic expectations often becomes overwhelming. This is where the concept of “take my class for me online” services has emerged as a practical solution for modern…
Epistolary Empathy: How Nursing Writing Services Reimagine the Therapeutic Power of Correspondence
The Return of the Letter in a Digital Age of Care
In an age dominated by digital communication, where messages are instant and emotions often compressed into text fragments or emojis, the deliberate act of letter writing stands as a radical gesture of care. Nursing writing services have begun to revive this epistolary tradition within clinical and reflective nursing practices, framing it as both a therapeutic intervention and a narrative method. The letter becomes more than communication—it becomes a sacred space where empathy, reflection, and meaning are co-created between writer and reader. In this reimagined context, letters written by nurses, patients, or interdisciplinary teams serve as bridges across…
Mastering FlexPath Assessments: A Comprehensive Guide to Success
Introduction
In today’s fast-paced academic and professional landscape, flexibility and self-paced learning are more important than ever. Capella University’s FlexPath program Help with Flexpath Assessment has emerged as a revolutionary model for students who wish to earn their degrees on their own schedule while balancing work, family, and personal commitments. Instead of traditional deadlines and discussion boards, FlexPath assessments allow learners to progress as soon as they master the required competencies.
While this innovative system offers immense benefits, many learners still find themselves overwhelmed when it comes to navigating, preparing, and excelling in FlexPath assessments. From structuring academic papers to meeting rubric criteria, students often seek help, guidance, and resources to ensure their…