In Mexico, 6 Million Suffer from "Rare Diseases" (La Voz de le Frontera)

Mexico City – Mrs. Mirna Esmeralda Hernandez Morales of the PRI, said that in Mexico there are about 6 million people with a condition known as "Rare disease" (ER). In most cases the patients are in danger of death or chronic disability. She explained that these evils, also known as orphan diseases, have a low incidence in the population and are considered as such, only affecting less than 5 people per 10,000 inhabitants, according to the World Health Organization (WHO).

An example is Addison Syndrome, suffering from a type of hormone that impairs people by the gradual destruction of the adrenal glands, causing anorexia, muscle weakness and eventually death said the lawmaker. Another is Asperser’s Syndrome, a mild form of autism that requires not only drug treatment, but constant therapeutic intervention of a psychiatric and pedagogical care.

Hernandez Morales stressed that any Government strategy aimed at reporting on these issues should not be perceived as public policy for the attention of ER. She mentioned that since 2008, our country has celebrated Rare Disease Day on the last day of February; However, there are no official figures indicating prevalence and much less information about where to go to receive a specialized diagnosis.

The treatments are extremely expensive and their diagnosis requires a very specific infrastructure, since there is indispensable evidence of genetic typing to which few people have access due to the high costs. Not all families have the economic resources to cope with this type of disease since treatments last for the rest of life, she said. She stressed that the rarity of ailments has led to scarce research about origins which prevents the search for specific treatments.

Therefore, Congresswoman Mirna Esmeralda Hernández presented a point before the Standing Committee to urge the Department of Health to provide strategies and programs for the care of ER as well as morbidity and mortality statistics related to these evils. In addition, for a Committee integrated within the health sector, in order to give free and comprehensive attention to this kind of suffering, especially in the field of early diagnosis. http://www.oem.com.mx/lavozdelafrontera/notas/n2849102.htm

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