DISTROFIA MUSCULAR DE DUCHENNE EN MEXICO PDF

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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Coping with Duchenne muscular dystrophy is difficult enough in the United States. 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.

Pablo David Paredes « World Duchenne Awareness Day

Part of the difficulty, she said, stems from a society that has not traditionally accepted people with disabilities, compounded by a lack of resources. Enlace is authorized to give medical consultations, do lab distrfoia, prescribe treatments and provide genetic analysis, psychotherapy, wheelchairs and transportation.

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But Duchenne is not included as a rare disease. This is why we are struggling.

Besides Enlace, four other Mexican organizations work with Duchenne patients: The five groups collaborate on various projects, including the dissemination of Spanish-language materials about Disfrofia and Becker muscular dystrophy online and via social duchejne.

Together, our five organizations are trying to get them to include Duchenne as a rare disease so catastrophic expenses will be covered. Rosa Elena Escobar, medical secretary for the association, said that her nonprofit has attended to Duchenne patients sincemany of whom have since died.

SMDM currently treats more than Duchenne patients, including one woman. 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. Before that, patients would usually die at 13 to Your email address will not be published.

Erick Roberto « World Duchenne Awareness Day

Duchenne boys gather for an Enlace event in Chihuahua, Mexico. 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.

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