Besides Enlace, four other Mexican organizations work with Duchenne patients: Sociedad Mexicana de Distrofía Muscular (SMDM) in Mexico. Mi nombre es Pablo David Paredes, tengo 11 años,padesco distrofia muscular de duchenne, vivo con mi mama Silvia, mi papa Christian y mi hermana Stefania. Mi nombre es Ernesto Baltazar. Tengo distrofia muscular Duchenne, soy un joven mexicano de 27 años con muchos sueños y ganas de vivir como tú. Escribí un.

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SMDM currently treats more than Duchenne patients, including one woman. Los esteroides a largo plazo han demostrado importantes beneficios para los pacientes, prolongan la deambulacion, reducen la necesidad de cirugia de columna, mejoran la funcion cardiorrespiratoria, y aumentan la supervivencia y la calidad de vida.

The long-term steroids have shown significant benefits, such as prolonging ambulation, reduce the need for spinal surgery, improve cardiorespiratory function and increase survival and the quality of life. Aunque actualmente continua siendo una enfermedad incurable, no significa que no tenga tratamiento.

Se han evaluado e implementado multiples propuestas con la finalidad de mejorar la calidad de vida en estos pacientes. Treatment should be multidisciplinary, looking for the functionality of the patient and avoiding or correcting complications, mainly cardio-respiratory and skeletal.

#PPMD2018 – Mexico Lags in Degree and Quality of Duchenne Care, Advocacy Groups Say

We never use your cookies for creepy ad retargeting that follows you around the web. If you continue to use this site we will assume that you are happy with it. La distrofia muscular de Duchenne ducchenne una enfermedad grave, incapacitante y progresiva que afecta a 1 de cada 3.


The diagnosis should be confirmed by genetic testing to identify the mutation in the DMD gene or muscle biopsy and immunostaining to demonstrate the absence of dystrophin. This document presents the recommendations based on the experience of the working group and experts worldwide on the diagnosis and treatment with steroids for patients with Duchenne muscular dhchenne.

Although up to now continues to be an incurable disease, this does not mean it has no treatment. Enlace is authorized to give medical consultations, do lab studies, prescribe treatments and provide genetic analysis, psychotherapy, wheelchairs and transportation. En este documento se presentan las recomendaciones con base en la experiencia del grupo de trabajo y de los expertos de ambito mundial sobre el diagnostico y el tratamiento con esteroides para los pacientes con distrofia muscular de Duchenne.

World Duchenne Awareness Day

We use cookies to ensure that we give you the best experience on our website. Rosa Elena Escobar, medical secretary for the association, said that her nonprofit has attended to Duchenne patients sincemany of whom have since died. Diagnostico y tratamiento con esteroides de pacientes con distrofia muscular de Duchenne: Besides Enlace, four other Mexican organizations work with Duchenne patients: Together, our five organizations are trying to get them to include Duchenne as a rare disease so catastrophic expenses will be covered.

Escobar said her clinic can perform muscular biopsies as well as multiplex ligation probe amplification MLPA to identify deletions and duplications within the dystrophin gene in Duchenne patients. The five groups collaborate on various projects, including the dissemination of Spanish-language materials about Duchenne and Becker muscular dystrophy online and via social media.

Este debe ser multidisciplinario, buscando la funcionalidad musculwr paciente y evitando o corrigiendo las complicaciones, principalmente cardiorrespiratorias y esqueleticas. Pin It on Pinterest. But Duchenne is not included as a rare disease. Coping with Duchenne muscular dystrophy is difficult enough in the United States.


Ernesto Baltazar « World Duchenne Awareness Day

Before that, patients would usually die at 13 to This is why we are struggling. Duchenne boys gather for an Enlace event in Chihuahua, Mexico. El diagnostico debera confirmarse mediante pruebas geneticas para identificar la mutacion en el gen DMD, o bien por biopsia muscular e inmunotincion para demostrar la ausencia de distrofina.

Duchenne muscular dystrophy is a severe, debilitating and progressive disease that affects 1 in 3, live male births in the world.

Photo Blog by Erick Roberto

Photo by Larry Luxner The five groups collaborate on various projects, including the dissemination of Spanish-language materials about Duchenne and Becker muscular dystrophy online and via social media. Part of the eb, she duchenme, stems from a society that has not traditionally accepted people with disabilities, compounded by a lack of resources.

Leave a Comment Cancel reply Your email address will not be published. But in neighboring Mexico, people with Duchenne often face social discrimination, lack of access to the newest therapies, a financially strapped healthcare system, and general ignorance.

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Many proposals have been evaluated and implemented with the aim of improving the quality of life for these patients.