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Welcome
Welcome to My Story Living With Lupus. Here you will find valuable information and resources to help you navigate your journey with lupus. Our goal is to provide support, education, and empowerment to individuals living with lupus. We understand that living with lupus can be challenging, but you are not alone. Join our community, share your story, and connect with others who understand what you're going through. Remember, this information is not intended to replace your doctor's advice. Always consult with your healthcare provider and follow their guidance.
CENTRO DE AYUDA
Información adicional
NOTICIAS Y RECURSOS
Lo que está sucediendo
LA IMPORTANCIA DE MANTENER SU CUERPO EN MOVIMIENTO MEDIANTE EL EJERCICIO.
¿QUÉ ES TENDENCIA? VEA LAS TENDENCIAS EN LAS ÚLTIMAS INVESTIGACIONES SOBRE EL LUPUS.
RECURSOS QUE ESTÁN DISPONIBLES PARA USTED.
New research highlights mental health support gap for autoimmune disease patients
Research by the University of Cambridge and King’s College London has suggested that the range of mental health and neurological symptoms is much wider than previously reported, as half of the patients with systemic autoimmune rheumatic diseases (SARDs) involved in the study had rarely or never reported their mental health symptoms to a clinician.
With SARDs, connective tissues such as cartilage, joint synovium and skin are more frequently targeted, as seen in conditions such as systemic lupus erythematosus, rheumatoid arthritis and systematic sclerosis.
In the Prevalence and identification of neuropsychiatric symptoms in systemic autoimmune rheumatic diseases study, the team surveyed neurological and psychiatric symptoms in 1,853 patients with SARDs. Almost 290 clinicians, mostly rheumatologists, psychiatrists and neurologists, were also surveyed and 113 interviews with patients and clinicians were conducted.
The team asked about 30 symptoms, including fatigue, hallucinations, anxiety and depression. Among the patients in the study, which was funded by the Lupus Trust and LUPUS UK, experience of most of those symptoms was found to be very widespread.
Approximately 55% of SARD patients experienced depression, 57% experienced anxiety, 89% experienced severe fatigue and 70% experienced cognitive dysfunction.
They also noticed a contrast in symptoms between patients and clinicians estimates: 47% of lupus patients reported that they were experiencing suicidal thoughts, compared to the 15% estimate by clinicians.
Dr Tom Pollak from the institute of psychiatry, psychology and neuroscience, King’s College London, said: "This study paints a startling picture of the breadth and impact of these symptoms. Everyone working in healthcare with these patients should routinely ask about mental well-being, and patients should be supported to speak up without fear of judgement."
Many patients in the study also expressed hesitancy about reporting mental health problems to clinicians. Patients said that when they did share their mental health symptoms with clinicians, they were often not commented on or documented correctly, if at all.
Dr Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge said: "The low level of reporting […] identified is a major concern as problems with mental health, fatigue and cognition can be life-changing, and sometimes life-threatening.”
She added: "It’s only by fully engaging patients in their healthcare and by asking them for their views that we will be able to determine the extent of these often-hidden symptoms, and help patients get the understanding, support and treatment they need."
Reference
PMLive 2023
View Gallery
There may be no better way to communicate the impact of how lupus can change ones life. It is stated that "A picture is worth a thousand words." As you browse our site, take a few moments to let your eyes linger here, and see if you can get a feel for how lupus can affect individuals differently.
NOTICIAS
Zumbido de los medios
ESCASEZ DE REUMATOLOGOS
En marzo En 2015, la Academia Estadounidense de Médicos de Familia publicó un informe que indicaba que Estados Unidos experimentaría una escasez de entre 46 000 y 90 000 médicos para 2025. El Colegio Estadounidense de Reumatología define a un reumatólogo como "un internista o pediatra que recibió capacitación adicional en el diagnóstico (detección) y tratamiento de enfermedades musculoesqueléticas y condiciones autoinmunes sistémicas comúnmente denominadas enfermedades reumáticas. Estas enfermedades pueden afectar las articulaciones, los músculos y los huesos causando dolor, hinchazón, rigidez y deformidad".
The Journal of Arthritis & Rheumatology, examinó el sistema educativo y cómo su disposición actual no podrá graduar suficientes reumatólogos nuevos para satisfacer la demanda de este tipo de atención.
Combine esa creciente demanda con el hecho de que muchos médicos que actualmente ejercen en el campo de la reumatología se acercan a la edad de jubilación, y comenzará a ver el alcance de la situación.
Referencia
Informe mundial y de noticias de EE. UU. (2018),
OBESIDAD, PARADOJA DE LA ACTIVIDAD DE LA ENFERMEDAD ENCONTRADA EN EL LES
Meeting mostró una correlación inversa entre el índice de masa corporal (IMC) y la actividad de la enfermedad en el lupus eritematoso sistémico (LES) después de ajustar por el uso de prednisona. "Esta es la primera evidencia de nuestro conocimiento de una paradoja de la obesidad en el lupus sistémico", escribieron los investigadores.
Para estudiar cómo los cambios en el IMC afectarían la actividad de la enfermedad, los investigadores examinaron a 2406 pacientes en una cohorte prospectiva de LES, evaluando su peso en cada visita. Los pacientes se clasificaron en 5 grupos según el peso: bajo (IMC ≤ 20 kg/m2), peso normal (referencia; IMC 20-24,9 kg/m2), sobrepeso (IMC 25-29,9 kg/m2), obesidad (IMC 30-34,9 kg/m2).
Referencia
Stojan G, Fu W, Petri M. Índice de masa corporal y actividad de la enfermedad en el lupus eritematoso sistémico: ¿una relación paradójica? Presentado en la Reunión Anual ACR/ARHP 2017; 3-8 de noviembre de 2017; San Diego, CA. Resumen 1634.
CARACTERÍSTICAS DEL LES DE INICIO TEMPRANO QUE SE DISTINGUEN DE LAS CONDICIONES IMITADORAS
Los pacientes con LES temprano tenían tasas más altas de fiebre inexplicable que aquellos con condiciones que simulaban LES. Se han identificado manifestaciones clínicas que diferencian el lupus eritematoso sistémico (LES) de inicio temprano de las condiciones que simulan el LES, según un estudio publicado recientemente en Arthritis & Rheumatology.
Este estudio incluyó a 389 personas con LES y 227 con condiciones que imitaban el LES. Base los datos se recolectaron utilizando los Centros Académicos de Lupus ubicados en 4 continentes e incluyeron personas que habían sido referidas por posible LES en los últimos 3 años con menos de 1 año de síntomas.
Referencia
Mosca M, Costenbader KH, Johnson SR, et al. ¿Cómo se presentan los pacientes con lupus eritematoso sistémico recién diagnosticado? Una cohorte multicéntrica de lupus eritematoso sistémico temprano para informar el desarrollo de nuevos criterios de clasificación [publicado en línea el 23 de julio de 2018]. Artritis Reumatol. doi: 10. 1002/art.40674
LA DEPRESIÓN RELACIONADA CON EL DOBLE DEL RIESGO DE LUPUS EN LAS MUJERES
Una historia de depresión se asocia con más del doble de riesgo de desarrollar lupus eritematoso sistémico (LES) entre las mujeres, sugiere una nueva investigación.
El estudio, que incluyó datos de casi 200.000 participantes en el Estudio de salud de enfermeras ll (NHS ll), respalda la hipótesis de que la depresión es un factor de riesgo causal para desarrollar LES, señalan los investigadores.
Referencia
JAMA Psiquiatría. Publicado en línea el 12 de septiembre de 2018. Resumen
Recuperado de: https://www.medscape.com (01 de octubre de 2018)
TÍTULO DEL ARTÍCULO LAS PROPUESTAS DE SALUD EN EL PRESUPUESTO DEL PRESIDENTE REDUCIRÍAN LA COBERTURA DEL SEGURO MÉDICO Y EL ACCESO A LA ATENCIÓN
Las políticas de salud en el presupuesto del año fiscal 2019 del Presidente son una continuación de la agenda de atención médica de la Administración del año pasado. A lo largo de 2017, el presidente presionó al Congreso para que promulgara una legislación que derogara la Ley del Cuidado de Salud a Bajo Precio (ACA, por sus siglas en inglés) y realizara profundos recortes en Medicaid. Mientras tanto, la Administración está utilizando exenciones y cambios regulatorios para implementar (y permitir que los estados implementen) políticas que dificultan que las personas elegibles obtengan cobertura y atención médica. El presupuesto se duplica en ambas áreas. Abarca el proyecto de ley de derogación y reemplazo de ACA patrocinado por los senadores Bill Cassidy, Lindsey Graham, Dean Heller y Ron Johnson (la propuesta "Cassidy-Graham"), luego propone recortar los fondos para los programas de cobertura muy por debajo de los niveles de ese proyecto de ley. . También incluye propuestas adicionales diseñadas para dificultar que las personas de ingresos bajos y moderados se inscriban en la cobertura de Medicaid y los subsidios del mercado, incluso mientras estos programas permanezcan disponibles en su forma actual. En total, el presupuesto recorta los subsidios del mercado de Medicaid y ACA en $763 mil millones durante diez años, y los recortes aumentan considerablemente con el tiempo.
Fuera de estas áreas, algunas de las propuestas de salud en el presupuesto tienen mérito y merecen una mayor consideración, por ejemplo, varias de sus reformas de pago de Medicare. Pero incluso en las áreas en las que el presupuesto presenta una agenda más positiva, como la salud del comportamiento y la política de medicamentos recetados, algunos aspectos de sus propuestas generan inquietudes.
Derogación de la Ley del Cuidado de Salud a Bajo Precio y revisión de Medicaid
El presupuesto adopta el proyecto de ley de derogación y reemplazo de Cassidy-Graham ACA, luego propone recortar los fondos de cobertura muy por debajo de los niveles del proyecto de ley. [2] Específicamente:
El presupuesto eliminaría por completo la expansión de Medicaid de ACA, que ha extendido la cobertura a 12 millones de adultos de bajos ingresos, así como los subsidios del mercado, que ayudan a más de 8 millones de personas a pagar la cobertura. El presupuesto elimina estos programas y exige que los estados presenten alternativas en menos de dos años. El resultado, según la Oficina de Presupuesto del Congreso (CBO), los comisionados estatales de seguros y los directores estatales de Medicaid, sería una interrupción masiva, dado el alcance del trabajo, el cronograma poco realista y los recursos insuficientes. [3]
El presupuesto reemplazaría las principales expansiones de cobertura de la ACA con una subvención en bloque muy inadecuada. Después de un aumento inicial, los niveles de financiamiento de las subvenciones en bloque finalmente caerían muy por debajo de los fondos de la ley actual para los programas de cobertura, ya que la subvención en bloque crecería solo con la inflación general, sin ajustes por el crecimiento de la población o los costos de atención médica. (Estos recortes se sumarían a las grandes reducciones en los fondos federales para la cobertura resultantes de la derogación del mandato individual de la ACA en el proyecto de ley de impuestos de diciembre, el requisito de que la mayoría de las personas tengan seguro médico o paguen una multa). año tras año por costos inesperados, lo que deja a los estados totalmente a cargo de todos y cada uno de los costos de recesiones, desastres naturales, emergencias de salud pública o aumentos en los precios de los medicamentos recetados, lo que dificulta aún más que los estados usen estos fondos para reemplazar incluso parcialmente Programas de cobertura de ACA. Al analizar la legislación Cassidy-Graham, la CBO concluyó que su subvención en bloque no permitiría a los estados establecer programas de cobertura comparables a los que existen bajo la ley actual. En cambio, los estados que no ampliaron Medicaid utilizarían fondos de subvenciones en bloque en parte para suplantar los fondos estatales para los programas existentes, mientras que los estados que ampliaron Medicaid tendrían dificultades para mantener la cobertura para adultos de bajos ingresos y, en general, no podrían reemplazar los subsidios ACA que hacen cobertura del mercado asequible para ingresos moderados
El proyecto de ley Cassidy-Graham que respalda el presupuesto también otorga a los estados amplia autoridad para eliminar o debilitar muchas de las protecciones de la ACA para las personas con condiciones preexistentes. Dependiendo de cómo usaran los dólares de las subvenciones en bloque, los estados podrían permitir que las aseguradoras cobren primas más altas para las personas con condiciones preexistentes o excluir los beneficios clave de la cobertura para todos los planes de mercado individuales. Como escribió la CBO en su análisis preliminar del plan Cassidy-Graham, debido a que la propuesta crearía una perturbación tan extrema en los mercados de seguros, los estados enfrentarían una intensa presión para tratar de estabilizar sus mercados debilitando estas protecciones.
Estas propuestas, en combinación con otras propuestas en el presupuesto (algunas se analizan a continuación), reducirían los fondos federales en un total de $763 mil millones durante el período de diez años que finaliza en 2028 (consulte la Figura 1), en comparación con los fondos de la ley actual para Medicaid. expansión y subsidios, y en alrededor de $1,1 billones en relación con la referencia antes de que el proyecto de ley fiscal derogara el mandato individual.[5] El resultado sería que millones perderían cobertura y una cobertura peor o menos asequible para millones más. Los expertos concluyeron que la propuesta de Cassidy-Graham para Medicaid y la ACA utilizada como marco para el presupuesto, en combinación con la derogación del mandato individual, probablemente conduciría a una pérdida total de cobertura de más de 20 millones de personas, y los recortes propuestos en el presupuesto a la cobertura son mucho más profundas
Referencia
Centro de Prioridades Presupuestarias y Políticas
16 de febrero de 2018
POR
Peggy Bailey, Matt Broaddus, Shelby Gonzales, Hannah Katch y Paul Van de Water[1]
Alternativa El manejo del dolor para el lupus
A la mayoría de los pacientes con lupus se les recetan analgésicos para el lupus. Pero, ¿has pensado en alternativas que sean menos dañinas para tu organismo? Bien, Yo tengo. Verá, he tenido un dolor constante durante los últimos 3 meses, no, no tomé ningún medicamento recetado para mi dolor, pero estuvo tan cerca de ir a la sala de emergencias. Sabía que tenía que haber una alternativa para manejar mi dolor, después de investigar el tema de la acupuntura llegué a la conclusión de que esta era la elección correcta para mí.
Acupuntura La Técnica
La técnica china de la acupuntura es uno de los procedimientos integradores más antiguos y utilizados en el mundo. La acupuntura se caracteriza por la colocación de agujas extremadamente finas en el cuerpo y reacciona con el cerebro para liberar sustancias químicas que reducen el dolor, regulan las hormonas e influyen en muchos de los sistemas del cuerpo. Una gran cantidad de investigación se ha realizado desde entonces y continúa hacerse con acupuntura. La investigación actual en la medicina occidental muestra que la acupuntura tiene un impacto en muchas de las funciones, receptores y sistemas del cuerpo. Está demostrado que puede ser eficaz para una serie de condiciones. Dolor de espalda y articulaciones, circulación, regulación del sistema digestivo, depresión, estrés y ansiedad, producción de hormonas, equilibrio del sistema inmunológico, tono muscular, regulación del sistema nervioso.
Pero, ¿qué afirman las investigaciones sobre este tratamiento para el dolor lúpico?
El Instituto Nacional de Salud realizó un estudio sobre el uso del tratamiento de acupuntura en pacientes con lupus; encontraron que 10 sesiones de acupuntura eran seguras y muy efectivas para pacientes con lupus sistémico. La acupuntura disminuyó el dolor y redujo la fatiga en los sujetos. El objetivo de este estudio fue determinar la viabilidad de estudiar la acupuntura en pacientes con lupus eritematoso sistémico (LES) y probar la seguridad y explorar los beneficios de un protocolo de acupuntura estandarizado diseñado para reducir el dolor y la fatiga. Veinticuatro pacientes con LES fueron asignados al azar para recibir 10 sesiones de acupuntura, agujas mínimas o atención habitual. El dolor, la fatiga y la actividad de la enfermedad de LES se evaluaron al inicio del estudio y después de las últimas sesiones. La seguridad se evaluó en cada sesión. Cincuenta y dos pacientes fueron seleccionados para inscribir a 24 personas elegibles e interesadas. Aunque se informaron efectos secundarios transitorios, como dolor breve de punción y mareos, no se asociaron eventos adversos graves con la acupuntura ni con los procedimientos de punción mínima. Veintidós participantes completaron el estudio, y la mayoría (85%) de los participantes de acupuntura y punción mínima pudieron completar sus sesiones dentro del período de tiempo especificado de 5 a 6 semanas. El 40 % de los pacientes que recibieron acupuntura o agujas mínimas tuvieron una mejoría >30 % en las medidas estándar de dolor, pero ningún paciente de atención habitual mostró una mejoría en el dolor. Un curso de diez sesiones de acupuntura parece factible y seguro para los pacientes con LES. Los beneficios fueron similares para
acupuntura y punción mínima.
Referencias
Greco DM, Kao AH, Maksimowicz-McKinnon K, et al. Acupuntura para el lupus eritematoso sistémico: un ECA piloto de viabilidad y estudio de seguridad. Lupus> 2008;17(12):1108-16.
Experts call for urgent mental health support for autoimmune disease patients
More than half of patients with auto-immune conditions experience mental health conditions such as depression or anxiety, yet the majority are rarely or never asked in clinic about mental health symptoms, according to new research from the University of Cambridge and King's College London.
In a study published today in Rheumatology, researchers found that over half of the patients had rarely or never reported their mental health symptoms to a clinician, and that the range of possible mental health and neurological symptoms is much wider than has been previously reported.
The team surveyed neurological and psychiatric symptoms amongst 1,853 patients with systemic auto-immune rheumatic diseases (SARDs) such as lupus and rheumatoid arthritis. The researchers also surveyed 289 clinicians, mostly rheumatologists, psychiatrists and neurologists, and conducted 113 interviews with patients and clinicians.
The 30 symptoms that the team asked about included fatigue, hallucinations, anxiety and depression. Among the patients in the study, experience of most of these symptoms was very widespread.
55% of SARD patients were experiencing depression, 57% experiencing anxiety, 89% had experienced severe fatigue and 70% had experienced cognitive dysfunction, for example. The overall prevalence of symptoms was significantly higher than previously thought, and much higher than in a control group of healthy volunteers.
The mental health symptoms described by patients contrasted strongly with clinician estimates. For example, three times as many lupus patients reported experiencing suicidal thoughts compared to the estimate by clinicians (47% versus 15%). Clinicians were often surprised and concerned by the frequency and wide range of symptoms that patients reported to the researchers.
Some clinicians were much more focused on joint symptoms over mental health symptoms as they held the opinion that SARDs do not commonly affect the brain.
However, other clinicians felt that these symptoms were under-estimated because patients were rarely asked about them in clinic. One rheumatology nurse interviewed said: "Doctors don't go looking for it [hallucinations], so if we don't ask we don't think it exists much."
The study found disagreements between clinicians specialising in different aspects of care, but very few hospitals had effective systems where rheumatologists, neurologists and psychiatrists worked together.
Pollak stated the study highlights the importance of all clinicians asking their patients about mental health:
The study showed that patients were often reticent to report to clinicians mental health problems they might be having, sometimes feeling that they might be stigmatised. Patients frequently said that even when they did share their mental health symptoms with clinicians, they were often not commented on or not documented accurately or at all.
One patient expressed how this felt: "Feel guilty and useless as well as depressed and very unwell. I don't really feel supported, understood, listened to, hopeful at all. It is awful living like this…. All just feels hopeless."
Dr Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge said: "The low level of reporting we identified is a major concern as problems with mental health, fatigue and cognition can be life-changing, and sometimes life-threatening. It's only by fully engaging patients in their healthcare and by asking them for their views that we will be able to determine the extent of these often hidden symptoms, and help patients get the understanding, support and treatment they need."
The research team suggests that though they found neurological and psychiatric symptoms to be under-elicited in clinic, under-identified in research and under-represented in clinical guidelines, they described almost all clinicians as highly motivated to improve care. Rapidly evolving knowledge – including the behavioural and cognitive impacts of chronic inflammation and a widening range of potential biomarkers – means that there is grounds for optimism.
Sarah Campbell, Chief Executive of the British Society for Rheumatology, commented: "This study highlights the urgent need for improvements in the access patients have to integrated mental health support. Given what the study finds on the prevalence of this issue and the deep impact neurological and psychiatric symptoms have on patients, it should be of grave concern to policy makers that only 8% of rheumatology departments in England and Wales have a psychologist embedded in their team. We fully support the study team's conclusion that more inter-disciplinary and patient-clinician collaboration is needed to ensure equity in the care of patients' mental and physical health."
The Rt Hon the Lord Blunkett said: "It's both surprising and deeply concerning that almost half of lupus patients have experienced suicidal thoughts, and that clinicians greatly under-estimate the mental health burden of these chronic diseases. This highlights the importance of extra funding for the NHS and the holistic care that is urgently needed for these patients. I echo the British Society of Rheumatologists' concerns about the poor current provision of mental health support. Now is the time for the Government to act to give them the support they desperately need."
Source:
Journal reference:
Sloan, M., et al. (2023) Prevalence and identification of neuropsychiatric symptoms in systemic autoimmune rheumatic diseases: an international mixed methods study. Rheumatology. doi.org/10.1093/rheumatology/kead369.
Scientists focus on understanding what underlies a difficult disease.
In an article published in Yale Medicine 2023 states.
One of the most difficult things about lupus, a chronic autoimmune disease, is that people who have it don’t always realize it—they know something’s not right, but they’re not sure what. They may feel exhausted and have pain that is vague, nonspecific, and unpredictable. They may look healthy, so if they complain, friends and family—and even some doctors—might not take it too seriously.
Lupus is difficult to diagnose and treat because its symptoms mimic other conditions, it affects the immune system differently in people, and drugs traditionally used to treat it come with serious side effects. Still, doctors and scientists are determined to find solutions.
Why lupus is so difficult to diagnose
It’s important for doctors and patients to know the signs and symptoms of lupus, confusing as they are, since people who have SLE take an average of six years to get a diagnosis, and that’s enough time for lupus to start causing damage in the body, says Dr. Koumpouras.
One problem is that there is no single test for the disease. A diagnosis is primarily based on symptoms, although there are blood tests that are consistent with the diagnosis of lupus, Dr. Craft explains.
One test, called an antinuclear antibody test, looks for a type of antibody that often attacks the body’s own tissue, creating an autoimmune reaction. While a positive result could signal an increased risk for lupus, there are also many people who get a positive result who will never develop the disease, says Dr. Kang.
“So, the important questions are: Who should be tested? When should they be tested? And if the result is positive, who should be treated?” Dr. Kang says. “We hope additional studies will lead to answers.”
While most people with SLE do not have family members with the disease, there is a genetic predisposition to lupus, and the number of genetic factors a person has can be a predictor of their risk for the disease, Dr. Craft adds.
But while such conditions as sickle cell disease or cystic fibrosis can be identified based on the presence of a single genetic mutation, there are well over 100 genetic markers for lupus, and those include genes that are found in people who don’t have the disease. “For example, you and I may have changes in our genes that can also be found in a lupus patient, but we maybe only have five or 10 of those. But if you have more of those changes, you'll be at greater risk of developing the disease. And that's why it's very hard to screen for,” Dr. Craft says.
There also is believed to be a hormonal factor, since lupus is so much more common in women than in men—in fact, nine out of 10 young people who have it are female, Dr. Koumpouras says. Curiously, after menopause—when estrogen levels dip—many women with lupus feel better, he adds.
“There's also a random event, or environmental factor, that we're not quite clear on, that causes further activation of the immune response,” he says.
Scientists are investigating all of this.
Yale Lupus Program: A ‘personalized medicine’ approach to lupus
Lupus manifests differently from patient to patient, which is one thing providers in the Yale Lupus Program have come to expect. “Lupus is like snowflakes in that no two cases are alike,” Dr. Koumpouras says.
The goal is to develop a personalized plan geared to lessen the impact of the disease on that patient’s life, he explains. “Then, I tend to see patients more frequently—maybe at four weeks instead of the typical three or four months after I first meet them,” he says. “We clinically measure how patients are doing with different scales and track their progress, aiming for a goal of remission or low disease activity.”
More lupus research is needed
The new drugs won’t help everyone with lupus, but Drs. Koumpouras and Craft believe there will be more treatments in the future.
“In the last 10 years, we've started to understand a lot more about the pathogenesis [the development path] of the disease, and that's been the major advance,” says Dr. Craft. “That understanding has led to these new drugs, and it will lead to the development of others.”
This is an encouraging time for lupus patients, he adds. “The combined expertise at Yale continues to advance the understanding and clinical care of SLE, and is part of a global mission to accelerate the discovery of a cure.”
Reference
Yale Medicine
lupus y linfoma
Sabemos que el LES (Lupus) es una enfermedad muy compleja, pero ¿sabía usted que las personas con LES (Lupus) son más susceptibles al linfoma? Sabemos que el lupus imita a muchas otras enfermedades, pero ¿cuál es realmente la conexión entre el lupus y el linfoma?
¿Qué sabemos acerca de la conexión entre lupus y linfoma? Bueno, sabemos más que hace 20 años, pero la respuesta aún puede ser "no lo suficiente", según un artículo de Boddu y colegas publicado en línea en la edición de marzo de 2017 de "Case Reports in Rheumatology".
Cuándo se desarrolla el linfoma en personas con lupus
El linfoma es un cáncer de los glóbulos blancos, particularmente de los glóbulos blancos conocidos como linfocitos Las dos categorías básicas de linfoma son linfoma de Hodgkin y linfoma no Hodgkin o LNH. Por lo general, el linfoma comienza en los ganglios linfáticos, pero también puede afectar a diferentes órganos y puede surgir en diferentes tejidos y estructuras del cuerpo, no solo en los ganglios linfáticos. Al igual que con el lupus, los síntomas del linfoma son variados y diferentes personas tienen diferentes síntomas de linfoma. A veces, el único síntoma es un ganglio linfático inflamado:
Inflamación indolora de los ganglios linfáticos en el cuello, las axilas o la ingle
fatiga y fiebre
Sudores nocturnos empapados
Pérdida de apetito, pérdida de peso inexplicable, tanto como el 10 % o más de su peso corporal
Picazón en la piel
Tos o dolor en el pecho, dolor o plenitud abdominal, erupciones y bultos en la piel
Realmente creo que estas dos condiciones se pueden solapar, ambos implican eses illn el sistema inmune. Ha habido varios estudios que muestran que las personas que tienen LES (lupus) tienen una mayor incidencia de linfoma en comparación con la población general. Una de las muchas teorías es que, en un sistema inmunitario que carece de la regulación adecuada (como en alguien con LES), el uso de terapia inmunosupresora para tratar el lupus puede causar una mayor incidencia de linfoma en el LES.
Lupus y Linfoma no Hodgkin
Sabemos que el LES (lupus) es una enfermedad muy compleja y se parece a muchas otras enfermedades. Pero, ¿se da cuenta de que las personas con LES (Lupus) son más susceptibles al linfoma? Para comprender la complejidad de esta enfermedad, debemos comprender cómo afecta el lupus al cuerpo y cómo funciona el LNH.
La mayor tasa de malignidad entre las personas con lupus sistémico se debe principalmente a un mayor riesgo de cáncer de los glóbulos blancos, en particular un riesgo tres veces mayor de linfoma, dice la investigadora Sasha R. Bernatsky, MD, profesora asistente en las divisiones de reumatología y clínica. Epidemiología en la Universidad McGill de Montreal.
Cuándo se desarrolla el linfoma en personas con lupus
¿Qué sabemos acerca de la conexión entre lupus y linfoma? Bueno, sabemos más que hace 20 años, pero la respuesta aún puede ser "no lo suficiente", según un artículo de Boddu y colegas publicado en línea en la edición de marzo de 2017 de "Case Reports in Rheumatology".
Effects of Stress on the Body: Everything You Need to Know
Close to 8.5 million Americans, nearly 3.5 percent of the adult population, report serious psychological distress. More than half, 55 percent, of the U.S. population say they are stressed during the day.
Stress can be beneficial in some cases, helping you to perform or be productive, but prolonged or chronic stress can actually make you sick. Stress, especially long-term stress, can impact nearly all of the body’s systems, having significant physical and mental effects.
Since most people are in some state of stress so much of the time, it can be difficult to recognize what stress actually is. It’s beneficial to know what stress looks like and exactly how it can impact the body, so you can learn how to manage it and better control your body’s stress response.
What Is Stress?
Stress is a response to physical, emotional, or mental tension or pressure. It is generally a reaction to a stimulus that activates the body’s fight-or-flight response.
During this time, your body prepares itself for action. Generally, your heart rate will speed up, your attention becomes focused, your muscles tense up, your blood pressure goes up, your body temperature increases, and your breathing speeds up.
Not all stress is bad. Some levels of stress are even considered beneficial. Stress can help you to focus and get things done as well as help to prevent accidents or injuries by alerting you to a potential danger.
The body is equipped to handle stress in appropriate doses. It is when stress overwhelms the body or becomes chronic that issues can arise.
Symptoms of Stress
Everyone handles and exhibits stress a little differently, so the symptoms can vary from person to person. Stress can impact every system in the body, from the ability to think clearly and emotions to behaviors and physical health.
Emotional
Emotional symptoms of stress can include the following:
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Easily frustrated
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Agitation
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Mood swings
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Difficulty relaxing
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Poor self-esteem
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Feelings of depression, loneliness, and worthlessness
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Loss of control or feeling the need to take control
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Avoidance or isolation
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Feelings of being overwhelmed
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Anxiety
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Irritability
Physical
Physical symptoms of stress can include the following:
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Headaches
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Insomnia or sleeping too much
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Low energy levels
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Muscle aches and tension
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Stomach upset, which can include nausea, diarrhea, and constipation
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Clenched or stiff jaw or neck
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Teeth grinding
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Loss of sexual desire
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Irregular heart rate
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Chest pain
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Cold, sweaty hands and feet
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Ringing in the ears
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Shaking or tremors
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Frequent infections or illness
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Dry mouth and difficulties swallowing
Cognitive
The cognitive symptoms of stress can include the following:
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Nervousness
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Worrying
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Disorganization
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Forgetfulness
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Poor judgment
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Difficulties focusing
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Racing thoughts and inability to quiet the mind
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Pessimism
Behavioral -
Behavioral symptoms of stress can include the following:
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Substance abuse
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Procrastination
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Social isolation
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Nervous behaviors like pacing, nail biting, or fidgeting
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Avoiding responsibilities
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Appetite changes
Effects of Long-Term Stress -
Stress is a common part of everyday life, and it generally resolves when the stressor is gone. If the stressor is not resolved and continues to influence the body’s stress response, the body will be unable to manage the stress levels, and it can remain in a constant state of stress.
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When stressed, the body produces the stress hormones cortisol and adrenaline. When the stressor is gone, the hypothalamus should tell the body to return to homeostasis. When this communication is dysfunctional, numerous health problems can arise, including metabolic disorders, chronic fatigue, immune disorders, and depression.
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Chronic stress continues for weeks or months. It can have a wide range of negative effects on the brain and body, resulting in issues for both mental and physical health.
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Chronic stress can cause a multitude of health problems, including these:
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Heart disease
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Diabetes
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Hypertension (high blood pressure)
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Menstrual problems
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Obesity
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Depression
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Anxiety
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Sexual dysfunction
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Skin problems, including acne or eczema
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Gastrointestinal issues, such as an irritable colon, GERD, ulcerative colitis, and gastritis
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Substance abuse and addiction
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Long-term stress can also exacerbate existing or underlying physical or mental health issues. Chronic stress is a risk factor for suicidal ideations.
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Stress left unchecked can wreak havoc on every single system in the body, as the body becomes overwhelmed by the stress hormones.
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Stress Effects on the Respiratory System
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When you are stressed, your breathing speeds up and you may feel short of breath. The airway between the nose and the lungs constricts. This can be an issue for anyone with breathing problems and pre-existing respiratory issues. Hyperventilation, or rapid breathing, caused by stress can induce a panic attack in those who are prone to panic attacks, for example.
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Stress-induced breathing issues can also trigger bigger issues in those with asthma, chronic bronchitis, COPD (chronic obstructive pulmonary disease), and emphysema. Acute stress can even potentially trigger an asthma attack.
Reference
Effects of Stress on the Body: Everything You Need to Know bocarecoverycenter.com
How Does Lupus Affect the Cardiovascular System
Lupus can affect the cardiovascular system, which includes your heart and blood vessels. In fact, cardiovascular disease, not lupus itself, is the number one cause of death in people with SLE. Therefore, it is very important that you take steps to maintain optimal cardiovascular health. Do not smoke, since smoking increases the risk of cardiovascular disease. A low-fat, low-cholesterol diet is also essential. Focus on eating whole grains, vegetables, and lean sources of protein. Limit your sodium (i.e., salt) intake, since sodium levels are directly linked to blood pressure. In addition, try to exercise at least 30 minutes per day. This goal can be difficult for people with lupus who experience reoccurring joint and muscle pain, fatigue, and other symptoms. However, engaging in low-impact daily activities such as walking, biking, yoga, Tai chi, and other forms of stretching may help to alleviate some of this pain while also helping you to maintain a healthy weight and strong cardiovascular system.
Hypertension (High Blood Pressure)
Fifty percent of people with lupus experience hypertension (high blood pressure), which is defined as a blood pressure of greater than 140/90 mmHg. In addition, many more lupus patients have blood pressures greater than the normal 120/80 mmHg limit. The most common causes of high blood pressure in people with lupus are obesity, kidney disease, and long-term steroid use. Other medications, such as cyclosporine (Neoral, Sandimmune, Gengraf) can also cause elevations in blood pressure.
High blood pressure can lead to kidney failure, stroke, heart failure, and heart attack. Since cardiovascular disease is the number one cause of death in people with lupus, it is very important that your blood pressure is brought to the healthy 120/80 mmHg level and kept there.
Reference
How Does Lupus Affect the Cardiovascular System : Johns Hopkins Lupus Center
NOTICIAS
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Study finds ‘startling’ levels of hidden mental health symptoms among people living with long term autoimmune diseases.
UNIVERSITY OF CAMBRIDGE
More than half of patients with auto-immune conditions experience mental health conditions such as depression or anxiety, yet the majority are rarely or never asked in clinic about mental health symptoms, according to new research from the University of Cambridge and King’s College London.
In a study published today in Rheumatology, researchers found that over half of the patients had rarely or never reported their mental health symptoms to a clinician, and that the range of possible mental health and neurological symptoms is much wider than has been previously reported.
The team surveyed neurological and psychiatric symptoms amongst 1,853 patients with systemic auto-immune rheumatic diseases (SARDs) such as lupus and rheumatoid arthritis. The researchers also surveyed 289 clinicians, mostly rheumatologists, psychiatrists and neurologists, and conducted 113 interviews with patients and clinicians.
The 30 symptoms that the team asked about included fatigue, hallucinations, anxiety and depression. Among the patients in the study, experience of most of these symptoms was very widespread.
55% of SARD patients were experiencing depression, 57% experiencing anxiety, 89% had experienced severe fatigue and 70% had experienced cognitive dysfunction, for example. The overall prevalence of symptoms was significantly higher than previously thought, and much higher than in a control group of healthy volunteers.
The mental health symptoms described by patients contrasted strongly with clinician estimates. For example, three times as many lupus patients reported experiencing suicidal thoughts compared to the estimate by clinicians (47% versus 15%). Clinicians were often surprised and concerned by the frequency and wide range of symptoms that patients reported to the researchers.
Some clinicians were much more focused on joint symptoms over mental health symptoms as they held the opinion that SARDs do not commonly affect the brain.
However, other clinicians felt that these symptoms were under-estimated because patients were rarely asked about them in clinic. One rheumatology nurse interviewed said: “Doctors don’t go looking for it [hallucinations], so if we don’t ask we don’t think it exists much.”
The study found disagreements between clinicians specialising in different aspects of care, but very few hospitals had effective systems where rheumatologists, neurologists and psychiatrists worked together.
Dr Tom Pollak from the Institute of Psychiatry, Psychology & Neuroscience at King’s College London, said the study highlights the importance of all clinicians asking their patients about mental health: “We have known for some time that having a systemic autoimmune disease can negatively affect one’s mental health, but this study paints a startling picture of the breadth and impact of these symptoms. Everyone working in healthcare with these patients should routinely ask about mental wellbeing, and patients should be supported to speak up without fear of judgement. No patient should suffer in silence.”
The study showed that patients were often reticent to report to clinicians mental health problems they might be having, sometimes feeling that they might be stigmatised. Patients frequently said that even when they did share their mental health symptoms with clinicians, they were often not commented on or not documented accurately or at all.
One patient expressed how this felt: “Feel guilty and useless as well as depressed and very unwell. I don’t really feel supported, understood, listened to, hopeful at all. It is awful living like this…. All just feels hopeless.”
Dr Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge said: “The low level of reporting we identified is a major concern as problems with mental health, fatigue and cognition can be life-changing, and sometimes life-threatening. It’s only by fully engaging patients in their healthcare and by asking them for their views that we will be able to determine the extent of these often hidden symptoms, and help patients get the understanding, support and treatment they need.”
The research team suggests that though they found neurological and psychiatric symptoms to be under-elicited in clinic, under-identified in research and under-represented in clinical guidelines, they described almost all clinicians as highly motivated to improve care. Rapidly evolving knowledge – including the behavioural and cognitive impacts of chronic inflammation and a widening range of potential biomarkers – means that there is grounds for optimism.
Sarah Campbell, Chief Executive of the British Society for Rheumatology, commented: "This study highlights the urgent need for improvements in the access patients have to integrated mental health support. Given what the study finds on the prevalence of this issue and the deep impact neurological and psychiatric symptoms have on patients, it should be of grave concern to policy makers that only 8% of rheumatology departments in England and Wales have a psychologist embedded in their team. We fully support the study team’s conclusion that more inter-disciplinary and patient-clinician collaboration is needed to ensure equity in the care of patients’ mental and physical health."
The Rt Hon the Lord Blunkett said: "It’s both surprising and deeply concerning that almost half of lupus patients have experienced suicidal thoughts, and that clinician greatly under-estimate the mental health burden of these chronic diseases. This highlights the importance of extra funding for the NHS and the holistic care that is urgently needed for these patients. I echo the British Society of Rheumatologists’ concerns about the poor current provision of mental health support. Now is the time for the Government to act to give them the support they desperately need."
The research was funded by The Lupus Trust and LUPUS UK
Reference
Sloan, M et al. Prevalence and identification of neuropsychiatric symptoms in systemic autoimmune rheumatic diseases: an international mixed methods study. Rheumatology; 26 Jul 2023; DOI: 10.1093/rhe/kead369
NOTICIAS
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Understanding Health Literacy
Health literacy is important for everyone because, at some point in our lives, we all need to be able to find, understand, and use health information and services.
Taking care of our health is part of everyday life, not just when we visit a doctor, clinic, or hospital. Health literacy can help us prevent health problems, protect our health, and better manage health problems when they arise.
Even people who read well and are comfortable using numbers can face health literacy issues when
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They aren’t familiar with medical terms or how their bodies work.
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They have to interpret statistics and evaluate risks and benefits that affect their health and safety.
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They are diagnosed with a serious illness and are scared and confused.
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They have health conditions that require complicated self-care.
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They are voting on an issue affecting the community’s health and relying on unfamiliar technical information.
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Become knowledgeable and understand health literacy. By becoming more knowledgeable you not only help yourself, but you also help and become partners with your healthcare provider.
Reference
Health Literacy Affects Everyone
Scientists working in the School of Biochemistry and Immunology in the Trinity Biomedical Sciences Institute at Trinity College Dublin have made an important breakthrough in understanding what goes wrong in our bodies during the progression of inflammatory diseases and -- in doing so -- unearthed a potential new therapeutic target.
The scientists have found that an enzyme called Fumarate Hydratase is repressed in macrophages, a frontline inflammatory cell type implicated in a range of diseases including Lupus, Arthritis, Sepsis and COVID-19.
Professor Luke O'Neill, Professor of Biochemistry at Trinity is the lead author of the research article that has just been published in leading international journal, Nature. He said:
"No-one has made a link from Fumarate Hydratase to inflammatory macrophages before and we feel that this process might be targetable to treat debilitating diseases like Lupus, which is a nasty autoimmune disease that damages several parts of the body including the skin, kidneys and joints."
Joint first-author Christian Peace added:
"We have made an important link between Fumarate Hydratase and immune proteins called cytokines that mediate inflammatory diseases. We found that when Fumarate Hydratase is repressed, RNA is released from mitochondria which can bind to key proteins 'MDA5' and 'TLR7' and trigger the release of cytokines, thereby worsening inflammation. This process could potentially be targeted therapeutically."
Fumarate Hydratase was shown to be repressed in a model of sepsis, an often-fatal systemic inflammatory condition that can happen during bacterial and viral infections. Similarly, in blood samples from patients with Lupus, Fumarate Hydratase was dramatically decreased.
Reference
Trinity College Dublin. "Potential new therapeutic target for inflammatory diseases such as lupus and sepsis." ScienceDaily. ScienceDaily, 8 March 2023. <www.sciencedaily.com/releases/2023/03/230308112118.htm>.
Campeones del lupus haciendo movimientos
How to Deal with Anxiety
Treatments for anxiety include prescription drugs, counseling, meditation and exercise. Experts recommend a combination of these modalities. Experiencing some anxiety when facing difficult decisions or life changes is normal, but when that anxiety interferes with daily life it becomes a disorder.
About 40 million American adults have an anxiety disorder, according to the National Alliance on Mental Illness. This makes anxiety disorders the most common mental illness in America.
Anxiety disorders are characterized by feelings of anxiety that go beyond worrying about everyday things like problems at work or school or dealing with life changes. People with anxiety disorders may have constant, uncontrollable fear that interferes with their lives.
COPING WITH ANXIETY DURING COVID-19
The stress of a crisis can take a toll on your mental health. Finding ways to cope with your fear and anxiety will help you and the people you care about stay strong during the coronavirus outbreak.Anxiety may also lead to other health problems or habits that may worsen health. For example, people with anxiety may suffer from insomnia, chronic pain or digestive problems. Smoking and vaping is also a problem for people with anxiety, and both of these habits lead to health problems.
People with anxiety and other mental disorders smoke at two to four times the rate of the general population, according to the National Institute on Drug Abuse. They are also twice as likely to have tried e-cigarettes, according to a 2014 study led by Sharon Cummins of University of California, San Diego School of Medicine.
“In my practice, I would say probably 40-ish percent of folks actually have an anxiety issue or disorder,” said licensed mental health counselor and psychotherapist Stacy O’Mara. “Usually for [these patients], that means they are missing sleep.” Treatment is recommended “when they’re at risk of maybe losing a job, losing a partner,” she said.
Anxiety manifests itself in many ways, from general anxiety disorder to social anxiety disorder. The condition is highly treatable, but less than 40 percent of people who experience anxiety receive treatment, according to the Anxiety and Depression Association of America.
Reference
How To Deal with Anxiety (2023) Retrieved from: How to Deal with Anxiety | Tips to Manage Stress and Reduce Anxiety (drugwatch.com)
General Resources
General Autoinmune Recursos de información sobre enfermedades
Asociación Americana de Enfermedades Autoinmunes Relacionadas
Oficina Nacional
22100 Gratiot Ave. E.
Eastpointe, MI 48201
(586) 776-3900
sitio web: https://aarda.org/
Información sobre más de cincuenta trastornos autoinmunes diferentes.
Institutos Nacionales de Salud
Bethesda, Maryland 20892-2350
http://www.niad.nih.gov/publications/autoimmune/autoimmune.htm
Foro de soporte de condiciones autoinmunes
http://www.delphiforums.com/autoinmunehelp
Un grupo de apoyo en línea que ofrece intercambio de información, apoyo y comunidad en línea.
Lupus/lupus eritematoso sistémico
Organizaciones de apoyo al paciente
Fundación Lupus de América, Inc.
2121 K Street NW, Suite 200
Washington, DC 20037
(202) 249-1155
Correo electrónico: info@lupus.org
Organización médica
Colegio Americano de Reumatólogos
2200 lago Blvd.,
Atlanta, Georgia 30319
(404) 633-3777
http://www.reumatología.org/
Protect yourself from the damage of chronic inflammation.
Science has proven that chronic, low-grade inflammation can turn into a silent killer that contributes to cardiovascular disease, cancer, type 2 diabetes and other conditions.
Reference
Harvard Medical School
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