jueves, 17 de noviembre de 2022

DÍA MUNDIAL DEL NIÑO - Declaración de los Derechos del Niño - Derecho a la Salud y a la Asistencia Sanitaria - Niños con Linfedema - Linfedema pediátrico y primario - Linfedema secundario - Filariasis linfática y podoconiosis

El 20 de noviembre es una fecha importante, es para promover la Declaración de los Derechos del Niño. Uno de los principales objetivos del Día Mundial del Niño es mejorar la salud y el bienestar de los niños. El artículo 24 (Derecho a la salud y a los servicios sanitarios) de la Convención sobre los Derechos del Niño declara: Los Estados Partes reconocen el derecho del niño al disfrute del más alto nivel posible de salud y a servicios para el tratamiento de las enfermedades y la rehabilitación de la salud. Los Estados Partes se esforzarán por asegurar que ningún niño sea privado de su derecho al disfrute de esos servicios sanitarios.

El linfedema es una enfermedad crónica y progresiva
debida a una disfunción del sistema circulatorio linfático. El linfedema es una enfermedad que puede afectar los brazos, las piernas, los dedos de las manos y pies, la cabeza, el cuello, el abdomen (vientre), los genitales, los órganos internos o todo el cuerpo, lo que provoca inflamación e hinchazón crónico en la zona afectada. En el caso de los niños, no sólo puede deberse a causas congénitas (Linfedema Primario), sino que también puede aparecer en la infancia a causa de infecciones parasitarias (filariasis linfática).

La filariasis linfática (FL) es una enfermedad olvidada y desatendida. Se reconoce como una enfermedad común y generalizada y gravemente discapacitante de los adultos, y en general se piensa que sólo se da de forma esporádica en los niños. Los nuevos avances en las pruebas diagnósticas (detección de antígenos, ultrasonografía Doppler y examen linfocintigráfico) han ayudado a reconocer la patología subclínica causada por esta infección y han revelado que el linfedema a menudo se adquiere por primera vez durante la infancia, y que hasta un tercio de los niños se infectan antes de los 5 años.

Estudios recientes indican que los fármacos utilizados en los programas de administración masiva de medicamentos son capaces de revertir el daño linfático subclínico en los niños y aportan otros beneficios además de la interrupción de la transmisión. Pero cuando hay un daño permanente e irreversible en el sistema linfático debido a la filariasis, éste también suele permanecer subclínico durante años o sólo da lugar a presentaciones inespecíficas de adenitis/adenopatía, que más tarde se desarrollarán y causarán linfedema en las extremidades. Las manifestaciones clínicas de la enfermedad aparecen con mayor frecuencia durante la edad adulta temprana o más tarde, y sin el tratamiento correcto, progresarán hasta su estadio grave tardío "la elefantiasis", hidrocele, y los consiguientes ataques agudos de dermato-linfangio-adenitis. Lea más sobre los signos y síntomas de la enfermedad AQUÍ.

Estudios han demostrado que la intervención comunitaria y familiar tiene un efecto positivo en los niños que ya tienen daños irreversibles en sus linfáticos, pero las medidas simples básicas por sí solas no son suficientes para la reducción y el control del edema. Las sociedades científicas internacionales recomiendan un tratamiento de compresión correcto y prendas compresivas para el control de la progresión y las manifestaciones clínicas a largo plazo de la enfermedad. Se ha comprobado que la patología entre los escolares, la mayoría de los cuales en los países en vías de desarrollo, nunca han recibido una atención médica adecuada y, desarrollan ansiedad y preocupaciones psicológicas sobre el impacto de la enfermedad y su desenlace.

En consecuencia, se ha prestado muy poca atención, si es que se ha prestado alguna, a los signos y síntomas de la filariasis linfática en la infancia. El linfedema, sea cual sea la causa o el entorno, necesita el mismo tratamiento y prendas de compresión para intentar evitar posteriores cirugías de reducción de masa o el desarrollo del grado de elefantiasis. Las organizaciones internacionales de salud deben implementar programas de tratamiento correctos y enfatizar la necesidad de realizar esfuerzos para aliviar la discapacidad tanto en los niños como en los adultos. Los sistemas nacionales de salud deben implementar el control del manejo de la morbilidad con un tratamiento de compresión correcto para el linfedema crónico. Lea más sobre cuál es el mejor tratamiento para los niños con linfedema AQUÍ.

Los estudios científicos destacan la importancia y las implicaciones de la terapia de compresión en el control de la progresión del linfedema. Los resultados clínicos de las intervenciones para controlar el linfedema muestran que es necesario adoptar medidas básicas sencillas basadas en la higiene, pero éstas no bastan por sí solas para reducir el tamaño y el volumen de las extremidades. El linfedema de las extremidades y los genitales deben tratarse siempre en sus primeros estadios, y no dejarse sin tratar hasta alcanzar la severidad del grado de la “elefantiasis”.

Reconocer que la enfermedad de linfedema comienza su desarrollo en la infancia tiene implicaciones prácticas inmediatas tanto para el manejo y la prevención de la enfermedad en pacientes individuales, como para los esfuerzos más amplios de salud pública para superar todas las enfermedades infantiles. Durante décadas, esta enfermedad (disfunción linfática), que es tratable y se puede controlar su progresión, encarna los fracasos de los sistemas sanitarios, los gobiernos y las sociedades a la hora de abordar las desigualdades e injusticias estructurales que permiten que prospere esta condición dura e ignorada. De acuerdo con los derechos del niño, todos los niños que sufren disfunción linfática (linfedema), sea cual sea su causa o contexto, deben tener acceso a tratamiento de compressión correcto para controlar esta enfermedad crónica y progresiva.

Referencias (textos en Inglés): 

Sociedades Científicas:

Estudios Científicos:





WORLD CHILDRENS DAY - Declaration of the Rights of the Child – The Right to Health and Healthcare – Children with Lymphedema - Pediatric and Primary Lymphedema – Secondary Lymphedema – Lymphatic Filariasis and Podoconiosis

November 20th is an important date, it is to promote the Declaration of the Rights of the Child. World Children's Day promotes and celebrates children's rights, and one of its main objectives is to improve children's health and welfare. ARTICLE 24 (health and healthcare) of the UN Convention on the Rights of the Child states: States Parties recognize the right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health. States Parties shall strive to ensure that no child is deprived of his or her right of access to such health care services.

Lymphedema is a chronic and progressive disease due to dysfunction of the lymphatic circulatory system. Lymphaedema is a disease that may affect arms, legs, fingers, toes, head, neck, abdomen (belly), genitalia, internal organs, or the whole body, which causes chronic inflammation and swelling in the affected area. Regarding children, it may not only be due to congenital causes (Primary Lymphedema), it can also appear in childhood caused by parasite infections (Lymphatic filariasis).

Lymphatic filariasis (LF) is a neglected disease. It is recognized as a common widespread, seriously handicapping disease of adults, and is generally thought to occur only sporadically in children. New advances in diagnostic tests (antigen detection, pulse-wave Doppler ultrasonography, and lymphoscintigraphy examination) have helped to recognize the subclinical pathology caused by this infection and have revealed that LF is often first acquired during childhood, with as many as one-third of children infected before age 5.

Recent studies indicate that drugs used in mass drug administration programs are capable of reversing sub-clinical lymphatic damage in children and provide benefits other than an interruption of transmission. But when there is permanent irreversible damage to the lymphatic system due to filariasis, it also generally remains subclinical for years or gives rise only to non-specific presentations of adenitis/adenopathy, which will later develop and cause lymphoedema of limbs. Clinical manifestations of the disease appear most frequently during early adulthood or later, and without correct treatment, will then progress to its late severe stage “elephantiasis”, hydrocele, and consequent acute attacks of dermatolymphangioadenitis. Read more about the signs and symptoms of the disease HERE.

Studies have shown that community and family-based intervention has a positive effect on children who already have irreversible damage to their lymphatics, but these measures alone are not enough for edema reduction and control. Correct compression treatment and compression garments are recommended by international scientific societies for the control of long-term clinical manifestations and disease progression. The disease among school children, most of who in developing countries never received proper medical attention, are found to develop anxiety and psychological concerns about the effect of the disease and their fate.

In consequence, very little attention, if any, has been given to the signs and symptoms of lymphatic filariasis in childhood. Lymphedema whatever the cause or setting, all need the same compression treatment and garments to prevent later debulking surgeries or the development of stage elephantiasis. International health organizations must implement correct treatment programs, and emphasize the need for disability-alleviation efforts among children as well as adults. Control of morbidity management with correct compression treatment for established lymphedema should be implemented by national health systems. Read more about what is the best treatment for children with lymphedema HERE.

Scientific studies highlight the importance and implications of compression therapy in controlling the progression of Lymphoedema. Clinical outcomes on interventions to manage lymphedema, show that simple hygiene-based measures are necessary, but these alone are not enough to reduce the limb size and volume. Limb and genital Lymphedema should always be treated in their early stages, and not left undertreated till reaching its severe stage “elephantiasis”.

Recognizing that LF disease starts its development in childhood has immediate practical implications both for the management and to prevent the progression of the disease in individual patients and for the broader public health efforts to overcome all childhood illnesses. For decades, this disease (lymphatic dysfunction) which is treatable and preventable, embodies the failures of health systems, governments, and societies to tackle the structural inequalities and injustices that allow this cruel and ignored condition to thrive. In accordance with children's and human rights, all children suffering from lymphatic dysfunction (lymphedema), whatever its cause or setting, should have access to the correct treatment to manage this chronic and progressive disease.


References: 

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Scientific Research:





miércoles, 28 de septiembre de 2022

THE SPANISH CONFEDERATION OF PEOPLE WITH PHYSICAL AND ORGANIC DISABILITIES (COCEMFE) - Awareness Campaign about Organic Disability - Primary Lymphedema - Secondary Lymphedema - Diseases of the Circulatory System

 

COCEMFE launches a campaign to raise awareness of Organic Disability

"It's our turn to be in sight"

  • Feeling invisible in the waiting room, on the way to work, at school, or in their free time is something that thousands of people with organic disabilities experience on a daily basis, conditioning their participation in society.

  • The Galician Association of Lymphoedema, Lipedema, and Chronic Venous Insufficiency (AGL) and the COCEMFE Associative Movement, advocate for the social and official recognition of organic disability as a necessary step for social inclusion and the full guarantee of rights.

  • This campaign continues and consolidates another action carried out by COCEMFE and its Associative Movement, with the publication of the White Paper on organic disability in April this year.

The Lymphedema, Lipedema, and Chronic Venous Insufficiency Galician Association of Galicia (AGL), together with the Spanish Confederation of People with Physical and Organic Disabilities (COCEMFE) and its Associative Movement have launched this Wednesday the campaign 'Invisibles' under the slogan " It's our turn to be in sight" and with the aim of making organic disability visible and denouncing the different discriminations that people with this type of disability have to face in their daily lives.

"In many cases, organic disability cannot be perceived at first glance ", explains the president of the national COCEMFE, Mr. Anxo Queiruga, who emphasizes the importance of "people with disabilities being guaranteed the exercise of their rights and achieving full inclusion and active participation in society". In particular, this lack of knowledge and understanding has a direct impact on the health and social health care that people with organic disabilities need, as well as on access to or maintenance of their jobs or educational and training opportunities. In addition, it also has an impact on leisure and sports options, interpersonal relationships, or access to social protection measures, such as the disability recognition certificate. "Invisibility at a social and official level, on behalf of the administrations, generates systematic exclusion", concludes Mr. Queiruga.

For all the reasons above, the Galician Association of Lymphoedema, Lipedema, and Chronic Venous Insufficiency (AGL), together with COCEMFE and its Associative Movement, defends that the action and commitment of the administrations and society as a whole are vital to eliminating these barriers: improve access to social and health services, achieve equitable coverage and proximity of support and accessible and inclusive spaces. To accomplish this, the 'Invisibles' campaign aims to raise awareness of the reality of people with organic disabilities and in particular of women and girls with disabilities, who have to face inter-sectional discrimination that prevents them from living their lives on equal terms.

This campaign continues and strengthens another action carried out by COCEMFE and its Associative Movement, with the publication of the White Paper on organic disability in April this year. These initiatives are funded through grants for the implementation of activities of general interest considered to be of social interest from the 0.7 calls of the Ministry of Social Rights and the 2030 Agenda.


Organic disability stems from a loss of functionality in one or more body systems (organs or systemic failures), usually caused by the development of chronic health conditions, which result in impairments that are mostly not directly perceptible. The internal, often unstable, and unpredictable course of such conditions, such as pain, flare-ups, or states of fatigue, are often not recognized or understood as part of the lived experience of people with disabilities. Neither is the constant attention to treatment and daily care that permanently interferes with and conditions life projects.