| Matilde Acosta | ||
| ISN Support Group Leader for Venezuela | ||
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I wanted to do something sinceI could identify with the loneliness that a patient feels when they know their diagnosis, when they find out that there is no cure, and see that some doctors have no interest in working with them since they are a minority and there is no specific medication for their illness. This leads them to depression, and the impotence someone experiences when they feel there is nothing else they can do. I followed the Argentinian Association's lead, and I started helping patients, giving them solace and a helping hand, like they have helped me, by means of the webpage HTTP://WWW.ESCLERODERMIAYALGOMAS.COM. I will soon publish the first magazine which should expand the educational outlook for everybody. The associations from Colombia, Argentina, Venezuela, Puerto Rico, Spain, and the United States, among others, are all in this fight, helping each other find a helping hand, someone who will wish us well, who will help us lift our fighting spirit, our self love, our hopes, our happiness and love of all. "If we push together we'll make it." You can reach me at matilde-acosta@sclero.org. |
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| Related Links | ||
| Nuevo Sclero Foro Español: Venezolana | ||
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| Venezuela Revista: Esclerodermia y Algo Mas (FLASH Document) —Gratis! | ||
(English) The Scleroderma Support Group of Venezuela (which is an affiliate of the ISN) has published a 41-page online FLASH magazine, in Spanish, Escleroderma y Algo Mas, which is free! Posted 10-29-08. |
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| Welcome Matilde Acosta: ISN Support Group Leader for Venezuela | ||
Matilde Acosta: ISN Support Group Leader for Venezuela. I have been a patient of systemic scleroderma for 9 years. Nowadays I run the Venezuela Scleroderma Association, an organization of my inspiration. I wanted to do something since I could identify with the loneliness that a patient feels when they know their diagnosis when they find out that there is no cure, and see that some doctors have no interest in working with them since they are a minority and there is no specific medication for their illness. Posted 05-10-07. (Also see: Venezuela Scleroderma Association ) |
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| (Español/Spanish) Matilde Acosta: Líder de Grupo de Apoyo de ISN para Venezuela | ||
Matilde Acosta: Líder de Grupo de Apoyo de ISN para Venezuela . Hola, soy Matilde Acosta, Líder de Grupo de Apoyo de ISN para Venezuela . Soy una paciente de esclerodermia sistemica desde hace 9 años, actualmente dirijo la Asociacion de esclerodermia de Venezuela, la cual fué inspirada por mi al sentir el desamparo en que se encuentra un paciente a la hora de saber el diagnostico, acompañado de la noticia de que no hay cura y tampoco interés de algunos galenos de trabajar con estos pacientes ya que representan la minoría y no existen medicamentos especificos para su enfermedad. Posted 05-10-07. (Also see: Venezuela Scleroderma Association ) |
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Hello, my name is Matilde Acosta, 
Matilde Acosta: ISN Support Group Leader for Venezuela.